ELSI Publications and Products

National Human Genome Research Institute

National Institutes of Health
U.S. Department of Health and Human Services


ELSI Publications and Products

The Ethical, Legal and Social Implications (ELSI) Research Program funds and manages grants to support research and education projects that examine ELSI issues, and also supports workshops, research consortia and policy conferences related to these issues.

Between 1990 and 2012, the ELSI program devoted close to $300 million to support nearly 500 research and education projects and conferences. These ELSI grants, contracts and related activities have resulted in more than 1,500 peer-reviewed journal articles, books, newsletters, Web sites and television and radio programs. Many of these products are listed below (updates are still in progress), arranged by the principle investigator's (PI) last name. For further project descriptions, use the ELSI Research Program Abstracts and Activities Database search.


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Publications for Other ELSI Program Activities

Publications for Grants and Contracts

ADEBAMOWO, Clement "West African Bioethics Training Program"
Adebamowo CA (2007). West African Bioethics Training Program: Raison D'être. Afr J Med Med Sci, 36 Suppl: 35-8. [PubMed]

Winkelman C (2008). Inflammation and Genomics in the Critical Care Unit. Crit Care Nurs Clin North Am, 20(2): 213-221, vi. [PubMed]

Fanshawe TR, Prevost AT, Roberts JS, Green RC, Armstrong D, Marteau TM (2008). Explaining Behavior Change after Genetic Testing: The Problem of Collinearity between Test Results and Risk Estimates. Genet Test, 12(3): 381-386. [PubMed Central]

Eyelade OR, Ajuwon AJ, Adebamowo CA (2011). An appraisal of the process of protocol review by an ethics review conmmittee in a tertiary institution in Ibadan. Afr J Med Med Sci, 40(1): 163-9. [PubMed]

AMUNDSON, Ronald "Why Do Disability Activists Reject the Genome Project?"
Amundson R, Tresky S (2008). Bioethics and disability rights: Conflicting values and perspectives. Journal of Bioethical Inquiry, 5(2-3): 111-123. [Georgetown GenETHX]

ANDERSON, Gwen "Genetics in Nursing Literature and Continuing Education"
Anderson G (1999). State of the science: Social, psychological, ethical nursing research in genetics. Biol Res Nurs, 1(2): 133-46. [PubMed]



Anderson G, Read CY, Monsen R (2000). Genetics, Nursing, and Public Policy: Setting an International Agenda. Policy Polit Nurs Pract, 1(4): 245-255. [Abstract]

ANDREWS, Lori "Conceptual Frameworks for Genetics Policy"
Andrews LB (1995). Genetic Fallout: New Technologies Are Changing the Legal Landscape. Trial, 31(12): 20-23, 25-27. [PubMed]

Andrews LB (1996). Prenatal Screening and the Culture of Motherhood. Hastings Law Journal, 47(4): 967-1006. [PubMed]

Andrews LB (1997). Compromised Consent: Deficiencies in the Consent Process for Genetic Testing. J Am Med Womens Assoc, 52(1): 39-42, 44. [PubMed]

Andrews LB (1997). Gen-etiquette: Are There Moral and Legal Responsibilities to Share Genetic Information within Families? In Rothstein M, Ed., Genetic Secrets: Protecting Privacy and Confidentiality in the Genetic Era. New Haven: Yale University Press.

Andrews LB (1997). Past as Prologue: Sobering Thoughts about Genetic Enthusiasm. Seton Hall Law Rev, 27(3): 893-918. [PubMed]

Andrews LB (1997). Body Science. American Bar Association Journal, 83: 44-49.

Andrews LB (1999). Predicting and Punishing Anti-Social Acts In Carson RA, Rothstein M, Bloom FE, eds, Behavioral Genetics: The Clash of Culture and Biology (224p). Baltimore, MD: Johns Hopkins University Press.

Angrist M (2009). Eyes wide open: the personal genome project, citizen science and veracity in informed consent. Per Med, 6(6): 691-9. [PubMed Central]

ARAR, Nedal "Beliefs and Attitudes Towards Hereditary Prostate Cancer"
Plaetke R, Thompson I, Sarosdy M, Harris JM, Troyer D, Arar NH (2002). Genetic fieldwork for hereditary prostate cancer studies. Urologic Oncology, 7(1): 19-27. [PubMed]

ARAR, Nedal "Cultural and Ethical Issues in Genetic Family Studies"
Arar NH, Plaetke R, Arar MY et al (2002). Incorporating the Contextual Assessment Approach to regimens used in genetic family studies. Genet Med, 4(6): 451-63. [PubMed]

Arar NH, Hazuda HP, Plaetke R et al (2003). Familial Clustering of Diabetic Nephropathy: Perceptions and Risk Recognition Among Mexican-American Patients With a Family History of Diabetes. Diabetes Spectrum, 16(3): 136-142.

ARMSTRONG, Katrina "Distrust, Race/Ethnicity, and Predictive Genetic Testing"
Peters N, Rose A, Armstrong K (2004). The Association between Race and Attitudes about Predictive Genetic Testing. Cancer Epidemiol Biomarkers Prev, 13(3): 361-5. [PubMed]

ARNOS, Kathleen "Summer Program in Genetics for Audiology Faculty"
Arnos KS, Della Rocca MG, Karchmer MA, Culpepper B, Cohn WF (2004). Genetics Content in the Graduate Audiology Curriculum: A Survey of Academic Programs. Am J Audiol, 13(2): 126-134. [PubMed]

Burton SK, Blanton SH, Culpepper B, White KR, Pandya A, Nance WE, Arnos KS (2006). Education in the genetics of hearing loss: A survey of early hearing detection and intervention programs. Genet Med, 8(8): 510-7. [PubMed]

ARONOWITZ, Robert "History of Breast Cancer Risk, 1900-Present"
Aronowitz RA (1998). The dilemma of genetic testing: the "breast cancer gene" and the physician's role, as ethics case study. ACP Observer, 18(3): 1.

Aronowitz RA (2001). Do not delay: Great cancer and Time, 1900-1970. Milbank Q, 79(3): 355-386. [PubMed]


ASCH, David "Genetic Testing And The Economics of Life Insurance"
Armstrong K, Weiner J, Weber B, Asch DA (2003). Early adoption of BRCA1/2 testing: who and why. Genet Med, 5(2): 92-8. [PubMed]

Armstrong K, Weber B, FitzGerald G et al (2003). Life insurance and breast cancer risk assessment: adverse selection, genetic testing decisions, and discrimination. Am J Med Genet A, 12A(3): 359-64. [PubMed]

ASCH, David "How Much Information about the Risk of Cystic Fibrosis Do Couples Want to Know?"
Asch D, Hershey JC (1995). Why Some Health Policies Don't Make Sense at the Bedside. Ann Intern Med, 122(11): 846-50. [PubMed]

Asch DA, Hershey JC, Pauly MV, Patton JP, Jedrziewski MK, Mennuti MT (1996). Genetic Screening for Reproductive Planning: Methodological and Conceptual Issues in Policy Analysis. Am J Public Health, 86(5): 684-90. [PubMed]

ASCH, David "Prescriptive Decision Modeling for Cystic Fibrosis Screening"
Asch D et al (1993). Clarification Needed to Cystic Fibrosis Model. Am J Obstet Gynecol, 168: 1358-9. [PubMed]

Asch DA, Patton JP, Hershey JC, Mennuti MT (1993). Reporting the Results of Cystic Fibrosis Carrier Screening. Am J Obstet Gynecol, 168(1 Pt 1): 1-6. [PubMed]

Asch DA, Hershey JC, DeKay ML et al (1998). Carrier Screening for Cystic Fibrosis: Costs and Clinical Outcomes. Med Decis Making, 18(2): 202-12. [PubMed]

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BAILEY, Donald "ELSI Scale-Up: Large Sample Gene Discovery & Disclosure"
Torke AM, Corbie-Smith G, Branch WT (2004). African American patients' perspectives on medical decision making. Arch Intern Med, 164(5): 525-30. [PubMed]

Torke AM, Corbie-Smith GM, Branch WT (2004). African american patients' perspectives on medical decision making. Arch Intern Med, 164(5): 525-530. [JAMA Internal Medicine]

Corbie-Smith G, Moody-Ayers S, Thrasher A (2004). Closing the circle between minority inclusion in research and health disparities. Arch Intern Med, 164(13): 1362-4. [PubMed]

Van Riper M, Gallo A (2006). Family, health, and genomics In Crane DR, Marshall ES, eds, Handbook of families and health: Interdisciplinary perspectives (195-218). Thousand Oaks, CA: Sage Publications Inc.

Van Riper M (2005). Genetic testing and the family. Journal of Midwifery and Women's Health, 50: 227-233. [PubMed]

Rothschild BB, Estroff SE, Churchill LR (2005). The cultural calculus of consent. Clinical Obstetrics and Gynecology, 48(3): 574-94. [PubMed]

Bailey DB, Skinner D, Warren SR (2005). Newborn Screening for Developmental Disabilities: Reframing Presumptive Benefit. Am J Public Health, 95(11): 1889-93. [PubMed]

Henderson GE, Easter MM, Zimmer C, King NMP, Davis A, Rothschild B, Churchill L, Wilfond B, Nelson D (2006). Therapeutic misconception in early phase gene transfer trials. Soc Sci Med, 62: 239-53. [PubMed]

Skinner D, Schaffer R (2006). Families and genetic diagnoses in the genomic and Internet age. Infants & Young Children, 19: 16-24.

Van Riper M (2006). Ethical, legal, and social implications In Runge MS, Patterson WC, eds, Principles of Molecular Medicine (Pp. 61-68). Totowa, NJ: Humana Press Inc.

Van Riper M (2006). Family nursing in the era of genomic health care: We should be doing so much more!. J Fam Nurs, 12: 111-118. [PubMed]

Van Riper M (2006). Family nursing in the era of genomic health care: we should be doing so much more!. J Fam Nurs, 12(3): 111-8. [PubMed]

Sterling R, Henderson GE, Corbie-Smith G (2006). Public Willingness to Participate in and Public Opinions About Genetic Variation Research: A Review of the Literature. Am J Public Health, 96(11): 1971-78. [PubMed]

Bailey DB, Beskow LM, Davis AM, Skinner D (2006). Changing Perspectives on the Benefits of Newborn Screening. Ment Retard Dev Disabil Res Rev, 12(4): 270-9. [PubMed]

Whitmarsh I, Davis AM, Skinner D, Bailey DB (2007). A place for genetic uncertainty: Parents valuing an unknown in the meaning of disease. Soc Sci Med, 65(6): 1082-93. [PubMed]

Skinner D, Weisner T (2007). Sociocultural studies of families of children with intellectual disabilities. Ment Retard Dev Disabil Res Rev, 13(4): 302-12. [PubMed]

King NMP (2006). Genes and TS: What will they tell us? Scientific, ethical, and social implications. In Walkup J, (ed.):, Advances in Neurology: Tourette Syndrome. Philadelphia: Lippincott Williams & Wilkins.

Evans JP (2008). Health care in the age of genetic medicine. Genet Med, 10(1): 1-3. [PubMed]

King NMP, Churchill LR (2008). Assessing and comparing potential benefits and risks of harm In Emanuel E, Wendler D, Crouch R, eds, Oxford textbook of clinical research ethics (514-26). New York, NY: Oxford University Press.

Schaffer R, Kuczynski K, Skinner D (2008). Producing genetic knowledge and citizenship through the Internet: Mothers, pediatric genetics, and cybermedicine. Sociology of Health and Illness, 30(1): 145-149. [PubMed]

Bailey D, Skinner D, Davis A, Whitmarsh I, Powell C (2008). Concerns about expanded newborn screening: Fragile X syndrome as a prototype for emerging issues. Pediatrics, 121(3): 693-704. [PubMed]

Corbie-Smith G, Blumenthal C, Henderson GE, Garrett J, Bussey-Jones J, Moloney ME, Sandler RS, Williams Lloyd S, Dorrance J, Darter J (2008). Studying genetic research participants: lessons from the "Learning About Research in North Carolina" study. Cancer Epidemiol Biomarkers Prev, 17(8): 2019-24. [PubMed]

King NMP (2009). The glass house: Assessing bioethics In Eckenwiler L, Cohn F, eds, The Ethics of Bioethics: Mapping the Moral Landscape (352). Baltimore, MD: Johns Hopkins University Press.

Bailey DB Jr, Armstrong FD, Kemper AR, Skinner D, Warren SF (2009). Supporting family adaptation to presymptomatic and ?untreatable? conditions in an era of expanded newborn screening. J Pediatr Psychol, 34(6): 648-61. [PubMed]

Whitmarsh I (2009). Hyperdiagnostics: postcolonial utopics of race-based biomedicine. Med Anthropol, 28(3): 285-315. [PubMed]




BASSETT, Susan "Perceptions of Risk and Genetic Testing for AD"
Chase GA, Geller G, Havstad SL, Holtzman NA, Bassett SS (2002). Physicians' propensity to offer genetic testing for Alzheimer's disease: Results from a survey. Genet Med, 4(4): 297-303. [PubMed]

BESKOW, Laura Mari "Ethical Approaches to Genotype-Driven Research Recruitment"
Cadigan RJ, Michie M, Henderson G, Davis AM, Beskow LM (2011). The meaning of genetic research results: reflections from individuals with and without a known genetic disorder. J Empir Res Hum Res Ethics, 6(4): 30-40. [PubMed]

BIESECKER, Barbara Bowles "A Conference on Human Genome Research Implications"
Biesecker BB, Vockley CW, Conover E (1993). Implications of Human Genome Research: Impact on Graduate Education in Genetic Counseling. J Genet Couns, 2(3): 213-229. [PubMed]

Punales-Morefon D, Rapp R (1993). Ethnocultural Diversity and Genetic Counseling Training: The Challenge for a Twenty-first Century. J Genet Couns, 2(3): 155-158.

Rapp R (1993). Amniocentesis in Sociocultural Perspective. J Genet Couns, 2(3): 183-196. [PubMed]

Smith ACM (1993). Update on Master's Genetic Counseling Training Programs: Survey of Curriculum Content and Graduate Analysis Summary. J Genet Couns, 2(3): 197-211.

Smith SC, Warren NS, Misra L (1993). Minority Recruitment into the Genetic Counseling Profession. J Genet Couns, 2(3): 171-181.

Weil J, Mittman I (1993). A Teaching Framework for Cross-Cultural Genetic Counseling. J Genet Couns, 2(3): 159-69. [Full Text]

BLACKER, Deborah "Genetic Knowledge and Attitudes in Alzheimer's Disease"
Blacker D, Tanzi RE (2000). Genetic Approaches to Risk Assessment: Implications for Early Diagnosis In Scinto L, Daffner K, (ed), Early Diagnosis of Alzheimer's Disease. Totowa, New Jersey: Humana Press.

Blacker D (2000). New Insights into Genetic Aspects of Alzheimer's Disease: Does Genetic Information Make a Difference in Clinical Practice?. Postgrad Med, 108(5): 119-22, 125-6, 129. [PubMed]

Blacker D (2000). New insights into genetic aspects of Alzheimer's disease. Does genetic information make a difference in clinical practice?. Postgrad Med, 108(5): 119-22, 125-6, 129. [PubMed]

Tanzi RE, Blacker D (2001). Genetic Screening in Alzheimer's Disease: Usefulness, limits, and future prospects. Generations, 24(1): 58.

Finn CT, Wilcox MA, Korf BR, Blacker D, Racette SR, Sklar P, Smoller JW (2005). Psychiatric genetics: a survey of psychiatrists' knowledge, opinions, and practice patterns. J Clin Psychiatry, 66(7): 821-30. [PubMed]

BLOSS, Cinnamon S "Response to Testing Among Individual Consumers of DTC Personal Genomics Services"
Bloss CS, Schork NJ, Topol EJ (2011). Effect of direct-to-consumer genomewide profiling to assess disease risk. N Engl J Med, 364(6): 524-34. [PubMed]

Bloss CS, Darst BF, Topol EJ, Schork NJ (2011). Direct-to-consumer personalized genomic testing. Hum Mol Genet, 20(R2): R132-41. [PubMed]

Bloss CS, Madlensky L, Schork NJ, Topol EJ (2011). Genomic information as a behavioral health intervention: can it work?. Per Med, 8(6): 659-57. [PubMed]

BLUMENTHAL, David "Academic-Industry Relationships in Genetics"
Blumenthal D (1992). Academic-Industry Relationships in the Life Sciences. JAMA, 268(23): 3344-3349. [PubMed]

Blumenthal D (1992). Academic-industry relationships in the life sciences. Extent, consequences, and management. JAMA, 268(23): 3344-9. [PubMed]

Blumenthal D (1994). Growing Pains for New Academic/Industry Relationships. Health Aff (Millwood), 13(3): 176-193. [PubMed]

Blumenthal D, Causino N, Campbell E, Louis KS (1996). Relationships between academic institutions and industry in the life sciences--an industry survey. N Engl J Med, 334(6): 368-73. [PubMed]

Blumenthal D, Campbell EG, Causino N, Louis KS (1996). Participation of life-science faculty in research relationships with industry. N Engl J Med, 335(23): 1734-9. [PubMed]

Campbell EG, Clarridge BR, Gokhale M et al (1997). Withholding Research Results in Academic Life Science. JAMA, 277(15): 1224-1228. [PubMed]

Blumenthal D, Campbell EG, Anderson MS, Causino N, Louis KS (1997). Withholding research results in academic life science. Evidence from a national survey of faculty. JAMA, 277(15): 1224-8. [PubMed]

Blumenthal D, Causino N, Campbell EG (1997). Academic-industry research relationships in genetics: a field apart. Nat Genet, 16(1): 104-8. [PubMed]

Campbell EG, Weissman JS, Blumenthal D (1997). Relationship between market competition and the activities and attitudes of medical school. JAMA, 278(3): 222-6. [PubMed]

Campbell EG, Louis KS, Blumenthal D (1998). Looking a gift horse in the mouth: corporate gifts supporting life sciences research. JAMA, 279(13): 995-9. [PubMed]

Campbell EG, Clarridge BR, Gokhale M, Birenbaum L, Hilgartner S, Holtzman NA, Blumenthal D (2002). Data Withholding in Academic Genetics: Evidence from a National Survey. JAMA, 287(4): 473-480. [PubMed]

BLUMENTHAL, David "Data-Sharing and Data-Withholding in Genetics Research"
Campbell EG, Clarridge BR, Gokhale M, Birenbaum L, Hilgartner S, Holtzman NA, Blumenthal D (2002). Data Withholding in Academic Genetics: Evidence from a National Survey. JAMA, 287(4): 473-480. [PubMed]

BOTKIN, Jeffrey "Behavioral and Psychosocial Effects of BRCA1 Testing"
Croyle RT, Smith KR, Botkin JR, Baty B, Nash J (1997). Psychological Responses to BRCA1 Mutation Testing: Preliminary Findings. Health Psychol, 16(1): 63-72. [PubMed]

Baty JB, Venne VL, McDonald J, Croyle RT, Smith K, Botkin JR (1997). Genetic Counseling Protocols for BRCA1 testing. J Genetic Counseling, 6(2): 223-244.

Botkin JR (1998). Ethical Issues and practical problems in preimplantation genetic diagnosis. J Law Med Ethics, 26(1): 17-28. [PubMed]

Smith KR, Zick CD, Mayer RN, Botkin JR (1999). Genetic testing and adverse selection in the market for life insurance: preliminary findings for the BRCA1 gene mutation In Thompson AK, Chadwick RF, (Eds), Genetic Information: Acquisition, Access and Control (p.57-70). New York, NY: Kluwer Academic/ Plenum Publishers.

Mayer RN, Smith KR, Zick CD, Botkin JR (1999). Coercion, control and consequences in genetic testing: views on insurance among tested individuals and the general public In Thompson, Chadwick, (Eds.), Genetic Information: Acquisition, Access and Control (p.41-56). New York, NY: Kluwer Academic/ Plenum Publishers.

Smith KR, West J, Croyle R, Botkin JR (1999). Familial context of genetic testing for cancer susceptibility: moderating effect of siblings' test results on psychological distress one to two weeks after BRCA1 mutation testing. Cancer Epidemiol Biomarkers Prev, 8(4 Pt 2): 385-92.

Botkin J (1999). Ethical and Legal Issues in Genetic Testing for Cancer Susceptibility In Shaw G, (ed), Cancer Genetics for the Clinician. Plenum Press.

Hamann HA, Croyle RT, Venne VL, Baty B, Smith KR, Botkin JR (2000). Attitudes toward the genetic testing of children among individuals tested for a BRCA1 gene mutation. Am J Med Genet, 92: 25-32.

Zick CD, Smith KR, Mayer RN, Botkin JR (2000). Genetic testing, adverse selection, and the demand for life insurance. Am J Med Genet, 93: 29-39.

Zick CD, Smith KR, Mayer RN, Botkin JR (2000). Genetic testing, adverse selection, and the demand for life insurance In Shaw G, ed, Cancer Genetics for the Clinician. New York, NY: Plenium Press.

Botkin JR, Smith KR, Croyle RT, Baty BJ, Wylie JE, Dutson D, Chan A, Hamann HA, Lerman C, McDonald J, Venne V, Ward JH, Lyon E (2003). Genetic testing for a BRCA1 mutation: prophylactic surgery and screening behavior in women 2 years post testing. Am J Med Genet A, 118A(3): 201-9. [PubMed]

Wylie JE, Smith KR, Botkin JR (2003). Effects of spouses on distress experienced by BRCA1 mutation carriers over time. Am J Med Genet C Semin Med Genet, 119C(1): 35-44. [PubMed]

BOTKIN, Jeffrey "Ensuring Confidentiality in the Publication of Pedigrees"
Botkin J (1995). Fetal privacy and confidentiality. Hastings Cent Rep, 25(5): 32-40. [PubMed]

Botkin JR, McMahon WM, Smith KR, Nash JE (1998). Privacy and Confidentiality in the Publication of Pedigrees: A Survey of Investigators and Biomedical Journals. JAMA, 279(22): 1808-1812. [PubMed]

Byers PH, Ashkenas J (1998). Pedigrees-publish? or perish the thought?. Am J Hum Genet, 63(3): 678-81. [PubMed]

BOTKIN, Jeffrey "Genetic Testing and Screening for Mental Health Disorders"
Botkin J, McMahon W, Francis L (eds) (1999). Genetics and Criminality: The Potential Misuse of Scientific Information in Court Washington, DC: The American Psychological Association Press 277p.

BOTKIN, Jeffrey "Prenatal Diagnosis and the Selection of Children"
Botkin JR (1998). Ethical issues and practical problems in preimplantation genetic diagnosis. J Law Med Ethics, 26(1): 17-28. [PubMed]

Botkin JR (2000). Line erasing: developing professional standards for prenatal diagnosis In Parens E, Asch A, eds, Prenatal Testing and Disability Rights (288-307). Washington, DC: Georgetown University Press.

Botkin JR (2000). Wrongful life and wrongful birth actions In Encyclopedia of Ethics, Legal, and Policy Issues in Biotechnology. John Wiley and Sons.

Botkin JR (2002). Review of. Camb Q Healthc Ethics, 11(1): 102-105.

Botkin JR (2002). Preimplantation genetic diagnosis and the biologic selection of children. Kaiser Permanente Newsletter, 6(4): 78-80. [Full Text]

Botkin JR (2003). Wrongful life and wrongful birth: ethical and legal issues in prenatal diagnosis. Fla State Univ Law Rev, 30(2): 265-93.

(2000). Wrongful life and wrongful birth actions In Borkin J, Murray T, Mehlman M, Encyclopedia of Ethics, Legal, and Policy Issues in Biotechnology. Hoboken, NJ: John Wiley and Sons.

Botkin J (2003). Prenatal diagnosis and the selection of children. Fla State Univ Law Rev, 30: 265-93.

BOTKIN, Jeffrey "Methods for Promoting Public Dialogue on the Use of Residual Newborn Screening"
Lewis MH, Goldenberg A, Anderson R, Rothwell E, Botkin JR (2011). State laws regarding the retention and use of residual newborn screening blood samples. Pediatrics, 127: 703-712. [PubMed]

BOTKIN, Jeffrey "Parent Education about Newborn Screening and Bloodspot Retention"
Botkin JR, Rothwell E, Anderson R, Stark L, Goldenberg A, Lewis M, Burbank M, Wong B (2012). Public attitudes regarding the use of residual newborn screening specimens for research. Pediatrics, 129(2): 231-8. [PubMed]

BOWEN, Deborah "Counseling Strategies for Breast Cancer Risk"
Bowen DJ, Farkas A, Vernon SW (1999). Psychosocial Issues in Cancer Genetics: From the Laboratory to the Public. Cancer Epidemiol Biomarkers Prev, 8(4 Pt 2): 326-8. [Pubmed]

Durfy SJ, Bowen DJ, McTiernan A et al (1999). Attitudes and Interest in Genetic Testing for Breast and Ovarian Cancer Susceptibility in Diverse Groups of Women in Western Washington. Cancer Epidemiol Biomarkers Prev, 8(4): 369-75. [PubMed]

McTiernan A, Kuniyuki A, Yasui Y et al (2001). Comparisons of two breast cancer risk estimates in women with a family history of breast cancer. Cancer Epidem Biomar, 10(4): 333-338.

Bowen DJ, Burke W, Yasui Y et al (2002). Effects of risk counseling on interest in breast cancer genetic testing for lower risk women. Genet Med, 4(5): 359-365. [PubMed]

Bowen DJ, Morasca AA, Meischke H (2003). Measures and correlates of resilience. Women Health, 38(2): 65-76. [PubMed]

Bowen DJ, Ludman E, Press N et al (2003). Achieving utility with family history - Colorectal cancer risk. Am J Prev Med, 24(2): 177-182.

Bowen DJ, Singal R, Eng E, Crystal S, Burke W (2003). Jewish identity and intentions to obtain breast cancer screening. Cultur Divers Ethnic Minor Psychol, 9(1): 79-87. [PubMed]

Bowen DJ, Ludman E, Press N, Vu T, Burke W (2003). Achieving utility with family history: colorectal cancer risk. Am J Prev Med, 24(2): 177-82. [PubMed]

Bowen DJ, Ludman E, Press N, Vu T, Burke W (2003). Achieving utility with family history: colorectal cancer risk. Am J Prev Med, 24(2): 177-82. [PubMed]

Bowen DJ, Helmes A, Powers D et al (2003). Predicting breast cancer screening intentions and behavior with emotion and cognition. J Soc Clin Psychol, 22(2): 213-232.

Bowen DJ, Bourcier E, Press N, Lerwin FM, Burke W (2004). Effects of Individual and Family Functioning on Interest in Genetic Testing. Community Genet, 7(1): 25-32. [PubMed]

Bowen DJ, Bradford J, Powers D (2006). Comparing sexual minority status across sampling methods and populations. Women Health, 44(2): 121-34. [PubMed]

Bowen DJ, Burke W, Culver JO, Press N, Crystal S (2006). Effects of counseling Ashkenazi Jewish women about breast cancer risk. . [PubMed]

BRANDT-RAUF, Paul "The ELSI of Genetic Testing in the Workplace"
Brandt-Rauf SI, Brandt-Rauf E, Gershon R, Brandt-Rauf PW (2011). The differing perspectives of workers and occupational medicine physicians on the ethical, legal and social issues of genetic testing in the workplace. New Solut, 21(1): 89-102. [PubMed]

BROWN, R. Steven "State Governments and the Human Genome Project"
Brown RS (1991). The State Response to Genetic Research. J State Gov, 64(3): 98-99.

Brown RS, Marshall K eds (1992). Advances in Genetic Information: A Guide for State Policy Makers Lexington, KY: The Council of State Governments 123p.

Brown RS (1992). State Governments and the Human Genome Project. Genetic Resour, 6(2): 19-21.

BROWNER, Carole "Genetic Counseling Strategies with Mexican-Origin Women"
Balzano S, Preloran HM, Browner CH (2002). El protocolo medico como una forma de performance cultural: La neutralidad profesional y su efecto en la vida de los Pacientes y sus Familias" (The consequences of competing client and clinician agendas in prenatal care). Revista de Investigaciones Folclóricas, 17: 145-155.

Browner CH, Preloran HM, Casado MC, Bass H, Walker A (2003). Genetic counseling gone awry: miscommunication between prenatal genetic service providers and Mexican-origin clients. Soc Sci Med, 56(9): 1933-46. [PubMed]

Preloran HM, Balzano S, Browner CH (2003). The Roles of Trust and Cross-Cultural Miscommunication in Clinical Decision-Making. Californian Journal of Health Promotion, 1(2): 198-207.

Preloran HM, Balzano S, and Browner CH (2004). Globalizacion y salud: El impacto de un protocolo medico sin fronteras (Globalization and Health: The Impact of a Medical Protocol Without Borders). Revista Anual Realidad del Cono Sur, 2(3): 287-304.

Preloran HM, Browner CH, Lieber E (2005). Impact of Interpreters' Approach on Latinas' Use of Amniocentesis. Health Educ Behav, 32(5): 599-612. [PubMed]

Browner CH, Preloran HM (). Culture and Communication in the Realm of Fetal Diagnosis. Unique Considerations for Latino Patients In Sharpe NF, Carter RF, eds, Genetic Testing: Current Practices, Ethical Concerns, Legal Considerations (31-44). NY: John Wiley & Sons.

Browner CH, Preloran HM (2006). Entering the Field: Recruiting Latinos for Ethnographic Work In Hobbs D, Wright R, eds, Handbook of Fieldwork (93-106). Thousand Oaks, CA: SAGE Publications.

BROWNER, Carole "Use of Amniocentesis by Mexicans and Mexican-Americans"
Preloran HM, Browner CH (1997). Paternidad Prenatal: parejas de origen mexicano decidiendo sobre el uso del diagnostico fetal. Revisa Anual de Investigaciones Folkloricas, 12.

Preloran HM, Browner CH (1997). Rol de la tradición en la prácticas del embarazo: efectos de la información genética entre Mexicanas residentes en Estados Unidos. Revista de Investigaciones Folkloricas, 12: 67-75.

Preloran HM, Browner CH, Balzano S (1999). Texto y contexto en el analisis de la narrativa: Renegociación de roles en situaciones médicas con peligro de vida. Scripta Ethnologica, 20: 23-36.

Browner CH, Preloran HM (1999). Male Partners' Role in Latinas' Amniocentesis Decisions. J Genet Couns, 8(2): 85-108. [PubMed]

Browner CH, Preloran HM, Cox SJ (1999). Ethnicity, Bioethics, and Prenatal Diagnosis: the Amniocentesis Decisions of Mexican-origin Women and their Partners. Am J Public Health, 89(11): 1658-66. [PubMed Central]

Browner CH, Preloran HM (2000). Para sacarse la espina (To Get Rid of the Doubt): Mexican Immigrant Women's Amniocentesis Decisions In Saetnan AR, Oudshoorn N, Kirejczyk M, eds, Bodies of Technology: Women's Involvement with Reproductive Medicine (pp. 368-383). Columbus: Ohio State University Press.

Browner CH, Preloran HM (2000). Interpreting Low-Income Latinas' Amniocentesis Refusals. Hisp J Behav Sci, 22(3): 346-68.

Browner CH, Preloran HM (2000). Latinas, Amniocentesis and the Discourse of Choice. Cult Med Psychiatry, 24(3): 353-75. [PubMed]

Browner CH (2000). Situating Women's Reproductive Activities. Am Anthropol, 102(4): 773-88.

Preloran HM, Browner CH, Lieber E (2001). Strategies for Motivating Latino Couples' Participation in Qualitative Health Research. Am J Public Health, 91(11): 1832-1841.

Root R, Browner CH (2001). Practices of the Pregnant Self: Compliance with and Resistance to Biomedical Prenatal Norms. Cult Med Psychiatry, 25(2): 195-223.

Markens S, Browner CH, Preloran HM (2003). I'm Not the One They're Sticking the Needle Into: Latino Couples, Fetal Diagnosis, and the Discourse of Reproductive Rights. Gender & Society, 17(3): 462-81. [Full Text]

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BUCHANAN, Allan "The Human Genome Initiative and Limits of Ethical Theory"
Buchanan AE, Brock DW, Daniels N, Wickler D (2000). From Chance to Choice: Genetics & Justice Cambridge, UK: Cambridge University Press 398p.

BULGER, Ruth "Predicting Future Disease: Issues in the Development, Application, and Use of Tests for Genetic Disorders"
(). how to format. .

BURHANSSTIPANOV, Linda "Genetic Education for Native Americans"
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Burhansstipanov L, Bemis L, Dignan M (2002). Native American Recommendations for Genetic Research to Be Culturally Respectful. Jurimetrics, 42(2): 149-57. [PubMed]

Dignan MB, Burhansstipanov L, Bemis L (2005). Genetic Education for Native Americans - Evaluation Methodology and Results. Genetics, 169: 317-321.

Dignan MB, Burhansstipanov L, Bemis L (2005). Successful Implementation of Genetic Education for Native Americans Workshops at National Conferences. Genetics, 169(2): 516-21. [PubMed]

Burhansstipanov L, Bemis L, Kaur JS, Bemis G (2005). Sample genetic policy language for research conducted with Native Communities. J Cancer Educ, 20(1 Suppl): 52-57. [PubMed]

Gamito E, Burhansstipanov L, Krebs LU, Bemis L, Bradley A (2005). Data Collection Using An Audience Response System. J Cancer Educ, 20(1 Suppl): 80-86. [PubMed]

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Romero F, Bemis L, Burhansstipanov L, Dignan M (2001). Genetic Research and Native American Cultural Issues. J of Women and Minorities in Science and Engineering, 7: 97-106.

BURKE, Wylie "Evaluating Use of Genetic Information: A Model Process"
Burke W, Pinsky LE, Press NA (2001). Categorizing Genetic Tests to Identify Their Ethical, Legal, and Social Implications. Am J Med Genet A, 106(3): 233-40. [PubMed]

Burke W (2002). Genetic testing. New Engl J Med, 347(23): 1867-75. [PubMed]

Burke W, Culver J, Pinsky L, Hall S, Reynolds SE, Yasui Y, Press N (2009). Genetic assessment of breast cancer risk in primary care practice. Am J Med Genet A, 149A(3): 349-56. [PubMed]

BURKE, Wylie "Genetic Susceptibility Testing for Breast Cancer"
Burke W, Kahn MJE, Garber JE, Collins FS (1996). "First do no harm" also applies to cancer susceptibility testing. Cancer J Sci Am, 2(5): 150-2. [PubMed]

Burke W, Press N, Pinsky L (1997). Breast Cancer Genetics from a Primary Care Perspective. Cancer, 80(3): 621-626.

Press N, Burke W, Durfy S (1997). How are Jewish women different from all other women? Anthropological perspectives on genetic susceptibility testing for breast cancer. Health Matrix Clevel, 7(1): 135-62. [PubMed]

Durfy SJ, Buchanan TE, Burke W (1998). Testing for inherited susceptibility to breast cancer: a survey of informed consent forms for BRCA1 and BRCA2 mutation testing. Am J Med Genet A, 75(1): 82-7. [PubMed]

Bars J, Hull J, Burke W (1998). Breast Cancer. .

Pinsky LE (1999). How to Interpret Sensitivity and Specificity In Burkholder L, Migeon M, Paauw D, eds, Internal Medicine Clerkship Guide (p24). St. Louis: Mosby Yearbook.

Gardner GC, Pinsky LE (1999). Perception and attitude of medical school faculty toward participation in university-sponsored continuing medical education. J Contin Educ Health Prof, 19(2): 122-8.

Durfy SJ, Bowen DJ, McTiernan A, Sporleder J, Burke W (1999). Attitudes and Interest in Genetic Testing for Breast and Ovarian Cancer Susceptibility in Diverse Groups of Women in Western Washington. Cancer Epidemiol Biomarkers Prev, 8(4): 369-375. [Pubmed]

Burke W, Press N, Pinsky L (1999). BRCA1 and BRCA2: a small part of the puzzle. J Natl Cancer Inst, 91(11): 904-5. [PubMed]

Pinsky LE, Deyo RA (2000). Clinical Guidelines: A Strategy for Translating Evidence into Clinical Practice In Geyman J, Deyo R, Ramsey S, eds, Evidence-Based Clinical Practice: Concepts and Approaches (177p). Woburn: Butterworth-Heinemann Medical.

Press NA, Burke W (2000). If You Care About Women's Health, Perhaps You Should Care About the Psychosocial Risks of Direct Marketing of Tamoxifen to Consumers. Eff Clin Pract, 3(2): 98-103.

Coughlin S, Burke W (2000). Public Health Issues in Genetic Testing for Predisposition to Cancer In Khoury MJ, Burke W, Thomson E, eds, Genetics and Public Health in the 21st Century (639p). New York: Oxford University Press.

Press NA, Yasui Y, Reynolds S, Durfy SJ, Burke W (2001). Women's Interest in Genetic Testing for Breast Cancer Susceptibility May be Based on Unrealistic Expectations. Am J Med Genet, 99: 99-110.

Burke W, Pinsky LE, Press NA (2001). Categorizing Genetic Tests to Identify Their Ethical, Legal, and Social Implications. Am J Med Genet, 106: 233-240.

Burke W, Olsen AH, Pinsky LE, Reynolds SE, Press NA (2001). Misleading Presentation of Breast Cancer in Popular Magazines. Eff Clin Pract, 4(2): 58-64. [PubMed]

Burke W (2002). Genetic testing. New Engl J Med, 347(23): 1867-75. [PubMed]

Koenig, B.A. and N.A. Press. "Desperately seeking narratives of genetic testing for breast cancer." Bioethics in Context. Barry Hoffmaster, Ed. Oxford University Press. (To be published)

BURKE, Wylie "Genomic Health Care and the Medically Underserved"
Burke W, Press N (2006). Ethical obligations and counseling challenges in cancer genetics. J Natl Compr Canc Netw, 4(2): 185-91. [PubMed]

Burke W, Press N (2006). Ethical obligations and counseling challenges in cancer genetics. J Natl Compr Canc Netw, 4(2): 185-91. [PubMed]

Burke W, Press N (2006). Genetics as a tool to improve cancer outcomes: ethics and policy. Nat Rev Cancer, 6(6): 476-82. [PubMed]

Burke W, Diekema DS (2006). Ethical issues arising from the participation of children in genetic research. J Pediatr, 149(1 Suppl): S34-8. [PubMed]

Carlsten C, Burke W (2006). Potential for genetics to promote public health: genetics research on smoking suggests caution about expectations. JAMA, 296(20): 2480-2. [PubMed]

Carlsten C, Burke W (2006). Potential for genetics to promote public health: genetics research on smoking suggests caution about expectations. JAMA, 28(20): 2480-2. [PubMed]

Fryer-Edwards K, Fullerton SM (2006). Relationships with test-tubes: where's the reciprocity?. Am J Bioeth, 6(6): 36-8. [PubMed]

Fryer-Edwards K, James R, Fullerton SM, Burke W. Response to NIH GWAS RFI: Comments re: NIH Proposed Policy for Sharing of Data from Genome-wide Association Studies. Submitted to NIH, Nov. 30, 2006.

Haga SB, Thummel KE, Burke W (2006). Adding pharmacogenetics information to drug labels: lessons learned. Pharmacogenet Genomics, 16(12): 847-854. [PubMed]

Paradies YC, Montoya MJ, Fullerton SM (2007). Racialized Genetics and the Study of Complex Diseases: the thrifty genotype revisited. Perspectives in Biology and Medicine, 50(2): 203-227. [PubMed]

Henrikson NB, Burke W, Veenstra DL (2008). Ancillary risk information and pharmacogenetic tests: social and policy implications. Pharmacogenomics J, 8: 85-89. [PubMed]

Burke W, Zimmern R (2007). Moving Beyond ACCE: An Expanded Framework for Genetic Test Evaluation. . [Full Text]

Burke W, Kroese M, Zimmern R (2007). Defining purpose: a key step in genetic test evaluation. Genet Med, 9(10): 675-81. [PubMed]

Veenstra DL, Harris J, Gibson RL, Rosenfeld M, Burke W, Watts C (2007). Pharmacogenomic testing to prevent aminoglycoside-induced hearing loss in cystic fibrosis patients: potential impact on clinical, patient, and economic outcomes. Genet Med, 9(10): 695-704. [PubMed]

Burke W, Psaty BM (2007). Personalized medicine in the era of genomics. JAMA, 298(14): 1682-4. [PubMed]

Veenstra DL, Harris J, Gibson RL, Rosenfeld M, Burke W, Watts C (2007). Pharmacogenomic testing to prevent aminoglycoside-induced hearing loss in cystic fibrosis patients: Potential impact on clinical, patient, and economic outcomes. Genet Med, 9(10): 695-704. [PubMed]

Yu JH, Goering S, Fullerton SM (2009). Race Based Medicine and Justice as Recognition: Exploring the Phenomenon of BiDil. Camb Q Healthc Ethics, 18(1): 57-67. [PubMed]

Carlson RJ (2008). Pre-emptive public policy for genomics. Journal of Public Health, Policy and Law, 33: 39-51. [PubMed]

Carlson RJ (2008). Preemptive public policy for genomics. J Health Polit Policy Law, 33(1): 39-51. [PubMed]

Tarini B, Burke W, Wilfond B (2008). Waiving informed consent in newborn screening research: balancing social value and respect. Am J Med Genet, 148(1): 23-30. [PubMed]

Burke W, Holland S, Kuszler P, Starks H, Press N (2008). Translational genomics: Seeking a shared vision of benefit. Am J Bioeth, 8(3): 54-6. [PubMed]

Jaja C, Burke W, Thummel K, Edwards K, Veenstra DL (2008). Cytochrome P450 enzyme polymorphism frequency in Indigenous and Native American populations: A systematic review. Community Genet, 11(3): 141-9. [PubMed]

Goering S, Holland S, Fryer-Edwards K (2008). Transforming genetic research practices with marginalized communities: a case for responsive justice. Hastings Cent Rep, 38(2): 43-53. [PubMed]

James RD, Yu JH, Henrikson NB, Bowen DJ, Fullerton SM (2008). Strategies and stakeholders: minority recruitment in cancer genetics research. Community Genet, 11(4): 241-9. [PubMed]

Shields AE, Burke W, Levy DE (2008). The use of available genetic tests among minority-serving physicians in the US. Genet Med, 10: 404-14. [PubMed]

Haga SB, Burke W (2008). Pharmacogenetic testing: not as simple as it seems. Genet Test, 10(391-5). [PubMed]

Shields AE, Fullerton SM, Olden K (2009). Genes, Environment, and Cancer Disparities In Koh H, ed, Dimensions of Cancer Disparities (49-82). New York, NY: Springer.

Burke W (2009). Clinical validity and clinical utility of genetic tests. Curr Protoc Hum Genet, Chapter 9(Unit 9): 9.15.1-3. [PubMed]

Caulfield T, Fullerton SM, Ali-Khan SE, Arbour L, Burchard EG, Cooper R, Hardy BJ, Harry S, Hyde-Lay R, Kahn J, Kittles R, Koenig B, Lee SSJ, Malinowski M, Ravitsky V, Sankar P, Scherer SW, Séguin B, Shickle D, Suarez-Kurtz G, Daar AS (2009). Race and ancestry in biomedical research: exploring the challenges. Genome Med, 1(1): 8. [PubMed]

Veenstra DL, Burke W (2009). Pharmacogenomics and Public Health. Public Health Genomics, 12(3): 131-3. [PubMed Central]



Burke W, Laberge AM, Press N (2010). Debating clinical utility. Public Health Genomics, 13(4): 215-23. [PubMed]

Fullerton SM, Anderson G et al (2010). Meeting the governance challenges of next-generation biorepository research. Sci Transl Med, 2(15): 15cm3. [PubMed Central]

Fullerton S, Yu J et al (2010). Population description and its role in the interpretation of genetic association. Hum Genet, 127(5): 563-72. [PubMed Central]

Beskow LM, Burke W (2010). Offering individual genetic research results: context matters. Sci Transl Med, 2(38): 38cm20. [PubMed Central]

Veenstra DL, Roth JA, Garrison LP Jr, Ramsey SD, Burke W (2010). A formal risk-benefit framework for genomic tests: facilitating the appropriate translation of genomics into clinical practice. Genet Med, 12(11): 686-93. [PubMed]

Carlsten C, Halperin A, Crouch J, Burke W (2011). Personalized medicine and tobacco-related health disparities: is there a role for genetics?. Ann Fam Med, 9(4): 366-71. [PubMed]

Beitelshees AL, Veenstra DL (2011). Evolving research and stakeholder perspectives on pharmacogenomics. JAMA, 306(11): 1252-3. [PubMed]

Burke W, Tarini B, Press NA, Evans JP (2011). Genetic screening. Epidemiol Rev, 33(1): 148-64. [PubMed Central]

Beskow LM, Namey EE, Cadigan RJ, Brazg T, Crouch J, Henderson GE, Michie M, Nelson DK, Tabor HK, Wilfond BS (2011). Research participants' perspectives on genotype-driven research recruitment. J Empir Res Hum Res Ethics, 6(5): 3-20. [PubMed]

Walker L, Starks H, West KM, Fullerton SM (2011). dbGaP data access requests: a call for greater transparency. Sci Transl Med, 3(113): 113cm34. [PubMed]

Dressler LG, Smolek S, Ponsaran R, Markey JM, Starks H, Gerson N, Lewis S, Press N, Juengst E, Wiesner GL; GRRIP Consortium (2012). IRB perspectives on the return of individual results from genomic research. Genet Med, 14(2): 215-22. [PubMed]

Edwards KL, Lemke AA, Trinidad SB, Lewis SM et al (2012). Genetics researchers' and IRB professionals' attitudes toward genetic research review: a comparative analysis. Genet Med, 14(2): 236-42. [PubMed]

Beskow LM, Burke W, Fullerton SM, Sharp RR (2012). Offering aggregate results to participants in genomic research: opportunities and challenges. Genet Med, 14(4): 490-6. [PubMed]

Wilfond BS, Diekema DS (2012). Engaging children in genomics research: decoding the meaning of assent in research. Genet Med, 14(4): 437-43. [PubMed]

Fullerton SM, Knerr S, Burke W (2012). Finding a place for genomics in health disparities research. Public Health Genomics, 15(3-4): 156-63. [PubMed]

Clayton EW, Haga S, Kuszler P, Bane E, Shutske K, Burke W (2013). Managing incidental genomic findings: legal obligations of clinicians. Genet Med, 15(8): 624-9. [PubMed]

Fullerton S, Lee S (2011). Secondary uses and the governance of de-identified data: Lessons from the human genome diversity panel. BMC Med Ethics, 12: 16. [PubMed Central]

Yu JH, Goering S, Fullerton SM (2009). Race-based medicine and justice as recognition: exploring the phenomenon of BiDil. Camb Q Healthc Ethics, 18(1): 57-67. [PubMed]

Woods B, Veenstra D, Hawkins N (2011). Prioritizing pharmacogenetic research: a value of information analysis of CYP2D6 testing to guide breast cancer treatment. Value Health, 14(8): 989-1001. [PubMed]

BURKE, Wylie "Guiding Clinicians in Genetic Assessment of Cancer Risk"
Burke W, Press N, Pinsky L (1997). Breast carcinoma genetics from a primary care perspective. Cancer, 80(S3): 621-26.

Burke W, Laya MB (1999). Genetic risk and breast cancer survival: another link in the chain of evidence. J Natl Cancer Inst, 91(3): 201-3. [PubMed]

Spanier BWM, Bruno MJ, Burke W et al (2003). Genetic testing. New Engl J Med, 348(11): 1066-1066.

Burke W, Pagon RA (2003). Correspondence: Genetic Testing. New Engl J Med, 348(11): 1067-1067. [PubMed]

Warkentin TE, Bernstein RA (2003). Correspondence: Genetic Testing. New Engl J Med, 348(11): 1067-9. [PubMed]

Ramsey SD, Burke W, Clarke L (2003). An economic viewpoint on alternative strategies for identifying persons with hereditary nonpolyposis colorectal cancer. Genet Med, 5(5): 353-363.

Culver JO, Bowen DJ, Reynolds SE, Pinsky LE, Press N, Burke W (2009). Breast cancer risk communication: assessment of primary care physicians by standardized patients. Genet Med, 11(10): 735-41. [PubMed]

BURKE, Wylie "Center for Genomics and Healthcare Equality"
Fullerton S (2007). On the absence of biology in philosophical considerations of race In Sullivan S, Tuana N, eds, Race and Epistemologies of Ignorance (276). Albany, NY: State University of New York Press.

Haga S, Burke W (2008). Pharmacogenetic testing: not as simple as it seems. Genet Med, 10(6): 391-395. [PubMed]

McGrath BB, Edwards KL (2009). When Family Means More (or Less) Than Genetics: The Intersection of Culture, Family, and Genomics. Journal of Transcultural Nursing, 20(3): 270-277. [PubMed Central]

BURNS, Joan "Partnership for Genetic Services"


Davidson ME, Weingarten K, Pollin TI, Wilson MA, Wilker N, Hsu N, Weiss JO (2000). Consumer perspectives on genetic testing: Implications for building family-centered public policies. Families, Systems and Health, 18(2): 217-35. [Full Text]

Davidson M, Weingarten K, Pollin T, Wilson M, Wilker N, Hsu N, Weiss J (2000). Consumer Perspectives on Genetic Testing: Implications for bulding family-centered public policies. Families, Systems and Health, 18(2): 217. [Full Text]

Davidson M, David K, Hsu N, Pollin T, Weiss J, Wilker N, Wilson M (). Consumer Perspectives on Genetic Testing: Lessons Learned In Khoury MJ, Burke W, Thomson EJ, eds, Genetics and Public Health in the 21st Century (579-602). New York: Oxford University Press.

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CHO, Mildred "BRCA1/2 Testing: Patient Uptake and Treatment Choices"
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CHO, Mildred "Effects of Gene Patents on Genetic Testing And Research"
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HOLTZMAN, Neil "Ethical and Legal Issues in the Diffusion of Genetic Tests"
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Holtzman NA (1996). Are we ready to screen for inherited susceptibility to cancer?. Oncology, 10: 57-64.

Holtzman NA (1996). Medical and ethical issues in genetic screening - An academic view. Environ Health Perspect, 104(5): 987-90.

Holtzman NA, Andrews L (1997). Ethical and legal issues in genetic epidemiology. Epidemiol Rev, 19: 163-74.

HOLTZMAN, Neil "Ethical and Policy Issues in Cystic Fibrosis Screening"
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Faden RR et al (1994). Attitudes of Physicians and Genetics Professionals Toward Cystic Fibrosis Carrier Screening. Am J Med Genet, 50(1): 1-11.

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HUDSON, Kathy "National Black Leadership Conference on Genetics"
IMAGN! Increasing Minority Awareness of Genetics Now! Conference Report. October 2004. Genetics & Public Policy Center. Johns Hopkins University.

HUGHES-HALBERT, Chanita "Comparing Models of Pre-Test Education for BRCA1 Testing"
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Lerman C (1997). Psychological aspects of genetic testing: Introduction to the Special Issues. Health Psychol, 16: 3-7.

Lerman C (1997). Translational Behavioral Research in Cancer Genetics. Preventative Medicine, 26: 565-69.

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Glanz K, Grove J, Lerman C et al (1999). Correlates of Intentions to Obtain Genetic Counseling and Colorectal Cancer Gene Testing Among At-Risk Relatives from Three Ethnic Groups. Cancer Epidemiol Biomarkers Prev, 8(4): 329-336. [PubMed]

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Tercyak KP, Peshkin BN, Streisand R, Lerman C (2001). Psychological issues among children of hereditary breast cancer gene (BRCA1/2) testing participants. Psycho-Oncology, 10: 336-46.

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Hughes C, Lerman C, Schwartz M, Peshkin BN, Wenzel L, Narod S, Corio C, Tercyak KP, Hanna D, Isaacs C, Main D (2002). All in the Family: Evaluation of the process and content of sister's communication about BRCA1 and BRCA2 genetic test results. Am J Med Genet, 107(2): 143-50.

Lerman C, Croyle RT, Tercyak P, Hamann H (2002). Genetic testing: Psychological aspects and implications. Journal of Consulting and Clinical Psychology, 70(3): 784-97.

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IONNO, Sandra "SPUSA 1999 International Conference Genetic Portions"
Mind-full: A Brainsnack for Future Leaders with Ethical Appetites: Volume Two. Washington, DC: Student Pugwash USA, May 1999.

Science and Social Responsibility in the New Millennium: Conference Report. Washington, DC: Student Pugwash USA, June 1999.

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Higman, Susan M. "Science and Social Responsibility in the New Millennium: Evaluation of Student Pugwash USA's 20th Anniversary Conference and Measurement of the Organization's Impact on Participants (Final conference assessment)." Baltimore, MD: June 29, 2000.

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JAVITT, Gail "Assessing the Impact of DTC Genetic Testing to Inform Policy Development"
Aronson JD (2011). The Strengths and Limitations of South Africa's Search for Apartheid-Era Missing Persons. Int J Transit Justice, 5(2): 262-81.

JAYARATNE, Toby "Beliefs among Whites and African-Americans about Genetic Causes for Gender, Class and Race Differences: Social-Political Educational Implications"
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Jayaratne TE, Ybarra O, Sheldon JP, Brown TN, Feldbaum M, Pfeffer CA, Petty EM (2006). White Americans' Genetic Lay Theories of Race Differences and Sexual Orientation: Their Relationship with Prejudice toward Blacks, and Gay Men and Lesbians. Group Processes & Intergroup Relations, 9(1): 77-94.

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Brown TN, Akiyama MK, White IK, Jayaratne TE, Anderson ES (2009). Differentiating Contemporary Racial Prejudice from Old-Fashioned Racial Prejudice. Race and Social Problems, 1(2): 97-110. [PubMed]

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JONSEN, Albert "A Paradigm Approach to Ethical Problems in Genetics"
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Jonsen AR (1996). The Impact of Mapping the Human Genome on the Patient Physician Relationship In Murray TH, Rothstein M, Murray R, eds, The Human Genome Project and The Future of Health Care (248p). Bloomington: Indiana University Press.

JUENGST, Eric "Anticipating Enhancement: Ethical, Legal and Social Issues"
Juengst ET (1997). Can Prevention be Distinguished from Enhancement in Genetic Medicine?. J Med Philos, 22: 125-142.

Whitehouse PJ, Juengst ET, Murray TH, Mehlman MJ (1997). Enhancing Cognition in the Intellectually Intact. The Hastings Center Report, 27: 14-23.

Juengst ET (1998). What Does Enhancement Mean? In Parens E, ed, Enhancing Human Traits: Ethical and Social Implications (pp 29-47). Washington, DC: Georgetown University Press.

Juengst ET, Walters L (1999). Ethical Issues in Human Gene Transfer Research In Friedman T, ed, The Development of Human Gene Therapy. Cold Spring Harbor, NY: Cold Spring Harbor Laboratory Press.

Juengst ET (1999). Anticipating Enhancement: A Conceptual and Ethical Challenge for Gene Therapy Regulation In Nordgren A, ed, Gene Therapy and Ethics (pp 97-109). Uppsala: Acta Universitatis Upsaliensis.

Juengst ET (1999). Concepts of Disease after the Human Genome Project In Wear S, James, eds, Ethics and Values in Health Care on the Frontiers of the Twenty-First Century (125-152). Uppsala: Uppsala University Library.

Mehlman MJ (1999). How Will We Regulate Genetic Enhancement?. Wake Forest Law Review, 34(3): 671-714.

Mehlman MJ (1999). The Human Genome Project and the Courts: Gene Therapy and Beyond. Judicature, 83(3): 124-130.

Juengst MJ (2000). The Law of Above Averages: Leveling the New Genetic Enhancement Playing Field. Iowa Law Review, 85: 124-130.

Juengst, E.T. "Enhancement: Ethical Issues." in The Encyclopedia of Ethical, Legal and Political Issues in Biotechnology, T. Murray and M. Mehlman, (eds.) New York: John Wylie & Sons, 2000. (In press).

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Juengst ET, Parens E (2003). Germ-line Dancing: Definitional Considerations for Science Policy Makers In Chapman A, Frankel M, eds, Designing Our Descendants: The Promises and Perils of Genetic Modifications (20-36). Baltimore, Md.: Johns Hopkins University Press.

JUENGST, Eric "Center for Genetic Research, Ethics, and Law (CGREAL)"
Hoffman S (2004). Is There a Place for 'Race' as a Legal Concept?. Arizona State Law Journal, 36(4): 1093-1159.

Juengst E, Ponsaran R (2004). Normal aging, disease prevention and medical ethics. Public Policy and Aging Report.

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Davis DS (2004). Genetic Research & Communal Narratives. Hastings Cent Rep, 34(4): 40-49. [PubMed]

Gaines AD (2005). Race: Local biology and culture in mind In Casey C, Edgerton RB, eds, A Companion to Psychological Anthropology (pp 274-97). Blackwell.

Hoffman S, Berg J (2005). The Suitability of IRB Liability. University of Pittsburgh Law Review, 67(2): 365-428.

Mehlman MJ (2005). Genetic Enhancement: Plan Now to Act Later. Kennedy Inst Ethics J, 15(1): 77-82. [PubMed]

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Macklin, R., Juengst, E.: Genetic and reproductive technologies. In The Encyclopedia of Philosophy, 2nd Edition. Thompson Gale. 2006.

Davis D. Genetic Testing and Tort Actions. In Genetic Testing: Care, Consent, and Liability. N.F. Sharpe and R.F, eds. Carter. Hoboken, N.J. , Wiley-Liss: 107-127. 2006.

Juengst E (2006). Altering the human species? Misplaced essentialism in science policy In Rasko J, O'Sullivan G, Ankeny R, eds, The Ethics of Inheritable Genetic Modification: A Dividing Line? (pp 149-58). Cambridge: Cambridge University Press.

Juengst ET, Goldenberg A (2008). Genetic diagnostic, pedigree and screening research In Emanuel E, Crouch R, eds, The Oxford Textbook of Clinical Research Ethics (298). Oxford University Press.

Juengst E (2006). Population-based Genetic Research and Screening: Conceptual and Ethical Issues In Steinbook B, ed, The Handbook of Bioethics (471-491). Oxford: Oxford University Press.

Marshall, P.: Ethical Issues in Research Design and Informed Consent in Resource Poor Countries. World Health Organization. 2006.

Marshall P, Berg J (2006). Protecting Communities in Biomedical Research. Am J Bioeth, 6(3): 28-30. [PubMed]

Dressler L, Juengst E (2006). Thresholds and boundaries in the disclosure of individual genetic research results. Am J Bioeth, 6: 18-20. [PubMed]

Hoffman S, Podgurski A (2007). Securing the HIPAA Security Rule. Journal of Internet Law, 10(1).



Davis D. The changing face of misidentified paternity. Journal of Medicine and Philosophy. [In Press]

Dressler L (2007). Control and Use of Banked Human Specimens in Research. Biospecimen. Journal of Cancer Epidemiology, Prevention and Biomarkers, 16(2): 190-191. [PubMed]

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Davis DS (2007). The changing face of misidentified paternity. J Med Philos, 32(4): 359-373. [PubMed]

Juengst E. Annotating the Moral Map of Enhancement: Gene Doping, the Limits of Medicine and the Spirit of Sport. Ethics, Genetics and the Future of Sport: Implications of Genetic Modification Selection. ed. T Murray. Washington, DC, Georgetown University Press. [In Press]

Juengst E, Grankvist H (2007). Ethical Issues in Human Gene Transfer: A Historical Overview In Ashcroft R, ed, Principles of Health Care Ethics (pp 789-796). John Wiley and Sons.

Leppert M, Matsuda I, et al. Community Engagement, Public Consultation, and Informed Consent in the International HapMap Project. Community Genetics. [In Press]

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Davis D (2007). A Thoughtful Look at Disability. Hastings Cent Rep, 54-55(2).

Davis D (2007). A Thoughtful Look at Disability. Hastings Cent Rep, 54-55(2).

Binstock RH and JR Fishman. Social Dimensions of Anti-Aging Science and Medicine, in Dale Dannefer and Chris Phillipson (eds.), International Handbook of Social Gerontology (Sage Publications, in press).

Davis D. Religion, Genetics, and Sexual Orientation: A First Cut, Kennedy Institute of Ethics Journal (in press).

Fishman JR, Binstock RH, Lambrix M. Anti-Aging Science: The Emergence, Maintenance, and Enhancement of a Discipline, Journal of Aging Studies. In Press.

Berg J. Of Elephant and Embryos: A Proposed Framework for Legal Personhood. Hastings Law Journal, In Press. 2008.

Genetic diagnostic, pedigree and screening research. The Oxford Textbook on the Ethics of Clinical Research. E. Emanuel, Grady, C., Reidar, L Miller, F. Wendler, D. Oxford University Press. In Press.

Settersten RA Jr, Flatt M, Ponsaran R. The Lure and the Lair of Anti-Aging Research: Top Scientists, a Contested Field, and the Struggle for Legitimacy. Journal of Aging Studies. In Press.

Workman ML, Winkelman C. (accepted for publication, anticipated out in August). The Genetics of Pulmonary Disease. Critical Care Nursing Clinics of North America.

JUENGST, Eric "Enhancement Ethics and the Molecular Genetics of Aging"
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Binstock R, Fishman J, Juengst E (2006). Anti-aging medicine and science: Social implications 6th Edition In Binstock R, George LK, Cutler SJ, Handbook of Aging and the Social Sciences. Academic Press.

Binstock RH, Fishman JR, Juengst ET (2006). Boundaries and labels: Anti-aging medicine and science. Rejuvenation Research, 9(4): 433-5. [PubMed]

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JUENGST, Eric "Enhancement: Professional Ethical and Public Policy Issues"
Juengst ET (2002). Growing pains: Bioethical perspectives on growth hormone replacement research. J Anti-Aging Med, 5(1): 73-79.

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KAHN, Jeffrey "Genetics & Disability Insurance Ethics, Law & Policy"
Kahn JP, Wolf SM (eds). Genetic Testing and Disability Insurance. JLME, Special Supplement 35:2; 90p. Summer 2007.

KAHN, Jonathan "Colliding Categories: Haplotypes, Race & Ethnicity"
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KAY, Lily "Information and the Transformation of Molecular Biology"
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Kelly S.E. "The 'new genetics' meets the old underclass: Findings from a study of genetic outreach services in rural Kentucky." Critical Public Health (accepted for special issue, Winter 2002)

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Kelly SE (2005). A different light - Examining, impairment through parent narratives of childhood disability. Journal of Contemporary Ethnography, 34(2): 180-205.

KEVLES, Daniel "Seminar on Ethical and Policy Issues Arising from the Project to Map and Sequence the Human Genome"
Kevles DJ, Hood L eds (1992). The Code of Codes: Scientific and Social Issues in the Human Genome Project Cambridge: Harvard University Press 397p.

Kevles, D.J. "Social and Ethical Issues in the Human Genome Project." Phi Kappa Phi Journal (National Forum). Spring 1993; 73: 18-21.

KILBERG, Richard "Our Genes/Our Choices"
Gesteland R.F. "Exploring genetic technology." video review. Judicature. May-June 2003; 86(6): 320-321.

KING, Mary Claire "Sequencing mtDNA for Human Identification"
King MC (1991). An Application of DNA Sequencing to a Human Rights Problem. .

Ginther C, Issel-Tarver L, King MC (1992). Identifying Individuals by Sequencing Mitochondrial DNA from Teeth. Nat Genet, 2: 135-138.

KINNEY, Anita "BRCA1 Testing in a Large African American Kindred"
Kinney AY, Croyle RA, Dudley WN, Neuhausen S, Pelias MK, Bailey C (2001). Knowledge and attitudes toward genetic testing among a large African American kindred with a BRCA1 mutation. Prev Med, 33: 543-551.

BRCA Team. (2001). Family health study. Salt Lake City, UT: Color Transfer. (Culturally targeted BRCA1 testing educational pamphlet).

Baty BJ, Kinney AY, Dudley W, Marshall E (2002). Uncertainty in a family at high risk for a BRCA1 mutation. J Genet Couns, 11: 470-471.

Kinney AY, Emery G, Dudley WN, Croyle RT (2002). Screening behaviors among African American women at high risk for breast cancer: Do beliefs about God matter?. Oncol Nurs Forum, 29: 835-843.

Baty BJ, Kinney AY, Simonsen S, Wiley A (2003). Developing culturally sensitive cancer genetics communication aids for African-Americans. Am J Med Genet, 118: 146-155.

Baty BJ, Dudley WN, Musters A, Kinney AY. Uncertainty in BRCA1 cancer susceptibility testing. Am J Med Genet Part C Semin Med Genet, 142(4):241-50. 2006. [PubMed]

KLITZMAN, Robert "Views and Approaches Toward Research Integrity Among IRBs"
Klitzman R (2006). Complications of culture in obtaining informed consent. Am J Bioeth, 6(1): 20-21. [PubMed]

Klitzman R (2006). Qualifying confidentiality: Historical and empirical issues and facts. Am J Bioeth, 6(2): 26-27. [PubMed]

Krosin M, Klitzman R, Levin B, Cheng J, Ranney ML (2006). Problems in comprehension of informed consent in rural and peri-urban Mali, West Africa. Clinical Trials, 3(3): 306-313. [PubMed]

Klitzman R (2006). Questions, complexities, and limitations in disclosing individual genetic test results. Am J Bioeth, 6(6): 34-36. [PubMed]

Klitzman R (2007). Additional implications of a national survey on ethics consultation in U.S. hospitals. Am J Bioeth, 7(2): 47-48. [PubMed]

Klitzman R, Siragusa J, Albala I, Appelbaum P (2007). The reporting of monetary compensation in research articles. J Empir Res Hum Res Ethics, 2(4): 61-67. [PubMed]

Klitzman R, Zolovska B, Folberth W, Chung W, Sauer M, Appelbaum P (2008). re-implantation Genetic Diagnosis: Ethics, Risks and Benefits. Fertility and Sterility, 92(4): 1276-1283.

Klitzman R, Appelbaum P, Chung W (2008). Anticipating issues related to increasing Pre-implantation genetic diagnosis use: A research agenda. Reproductive Biomedicine, 17(1): 33-42. [PubMed]

Klitzman R, Albala I, Siragusa J, Appelbaum P (2008). The reporting of compensation and risks on. IRB, 30(1): 15-20.

Klitzman R (2008). Views of the process and content of ethical reviews of HIV vaccine trials among members of US Institutional Review Boards and South African Research Ethics Committees. Dev World Bioeth, 8(3): 207-218. [PubMed]

Klitzman, R and Sauer, M. Should egg donors in stem cell research be paid, and if so, how much? Reproductive BioMedicine Online, 18(5):603-608.

Appelbaum P, Lidz C, Klitzman R (2009). Voluntariness of Consent to Research: A Conceptual Model. Hastings Cent Rep, 39(1): 30-39.

Appelbaum P, Lidz C, Klitzman R (2009). Voluntariness of Consent to Research: A Preliminary Empirical. IRB, 31(6): 10-14.

Kleinert, K, Rifai, H, and Klitzman, R. Reporting of IRB approval in journal articles that present research conducted in the developing world. Developing World Bioethics, doi: 10.1111/j. 1471-8847. 2011 [PubMed]

Klitzman, R. Genetic Discrimination Post-GINA: Subtle and Indirect Discrimination. Journal of Genetic Counseling. [In Press]

Fisher, C. F., Chin, L., Klitzman, R. The Marketing of Neuromarketing: Ethical and Policy Considerations. Harvard Review of Psychiatry. [In press]

KLITZMAN, Robert "Views of Privacy of Genetic Information"
Klitzman R, Kirshenbaum S, Kittel L et al (2004). Intricacies and Inter-relationships Between HIV Disclosure and HAART: A Qualitative Study. AIDS Care, 16(5): 628-640. [PubMed]

Klitzman R, Kirshenbaum SB, Kittel L, Morin SF, Daya S, Mastrogiacomo M, Rotheram-Borus MJ (2004). Naming Names: Perceptions of Name-Based HIV Reporting, Partner Notification, and Criminalization of Non-disclosure Among Persons Living With HIV. Sexuality Research and Social Policy, 1(3): 38-57. [Full Text]

Klitzman R, Bayer R (2005). Mortal Secrets: Truth and Lies in the Age of AIDS : Johns Hopkins University Press.

Klitzman R. Clinical Neuroethics. In Neuroethics. Oxford University Press. J. Illes (editor). [In Press]

KNOPPERS, Bartha "The First International Conference on DNA Sampling & Human Genetic Research: Ethical, Legal and Policy Aspects"
Knoppers BM, Laberge CM, Hirtle M eds (1997). Human DNA: Law and Policy The Hague, The Netherlands: Kluwer Law International.

KOENIG, Barbara "A Case-Based Ethics Curriculum for the Biotech Industry"
Kuppermann M, Gates E, Washington AE (1996). Racial/Ethnic Differences in Prenatal Diagnostic Test Use and Outcomes: Preferences, Socioeconomics or Patient Knowledge?. Obstet Gynecol, 87: 675-82.

Kuppermann, M., D. Feeny, E. Gates, S. Posner, B. Blumberg, A.E. Washington. "Preferences of Women Facing a Prenatal Diagnostic Choice: Implications for Genetic Testing Guidelines." Medical Decision Making. 1996; 16: 466. (Abstract)

KUPPERMANN, Miriam "Optimizing Prenatal Testing Decision-Making"
Kuppermann M, Gates E, Washington AE (1996). Racial/Ethnic Differences in Prenatal Diagnostic Test Use and Outcomes: Preferences, Socioeconomics or Patient Knowledge?. Obstet Gynecol, 87: 675-82.

Kuppermann, M., D. Feeny, E. Gates, S. Posner, B. Blumberg, A.E. Washington. "Preferences of Women Facing a Prenatal Diagnostic Choice: Implications for Genetic Testing Guidelines." Medical Decision Making. 1996; 16: 466. (Abstract)

Knoppers BM, Laberge CM, Hirtle M eds (1997). Human DNA: Law and Policy The Hague, The Netherlands: Kluwer Law International.

Kuppermann M, Shiboski S, Feeny D, Elkin E, Washington AE (1997). Can Preference Scores for Discrete States be Used to Derive Preference Scores for an Entire Path of Events? An Application to Prenatal Diagnosis. Med Decis Making, 17: 42-55.

Kuppermann M, Feeny D, Gates E, Posner S, Blumberg B, Washington AE (1999). Preferences of women facing a prenatal diagnostic choice: Long-term outcomes matter most. Prenatal Diagnosis, 19: 711-6.

Ratliff A, Angell M, Dow RW, Kuppermann M et al (1999). What is a good decision?. Eff Clin Pract, 2: 185-97.

Kupperman M, Goldberg JD, Nease RF, Washington AE (1999). Who should be offered prenatal diagnosis? The thirty-five-year-old question. Am J Public Health, 89: 160-3.

Moyer A, Brown BA, Gates E, Daniels M, Brown HD, Kuppermann M (1999). Decision about prenatal testing for chromosomal disorders: Perceptions of a diverse group of pregnant women. J Womens Health Gend Based Med, 8(4): 521-31. [PubMed]

Ostrove JM, Adler NE, Kuppermann M, Washington AE (2000). Objective and subjective assessments of socioeconomic status and their relationship to self-rated health in an ethnically diverse sample of pregnant women. Health Psychol, 19: 613-8.

Kuppermann M, Nease RF, Learman LA, Gates E, Blumberg B, Washington AE (2000). Procedure-related miscarriages and Down syndrome-affected births: Implications for prenatal testing based on women's preferences. Obstet Gynecol, 96: 511-6.

Kuppermann M, Nease RF, Ackerson LM, Black SB, Shinefield HR, Lieu TA (2000). Parents preferences for outcomes associated with childhood vaccinations. Pediatric Infectious Disease Journal, 12: 129-33.

Harris RA, Washington AE, Feeny D, Kuppermann M (2001). Decision Analysis of Prenatal Testing for Chromosomal Disorders: What Do the Preferences of Pregnant Women Tell Us?. Genet Test, 5(1): 23-32.

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LAPHAM, E. Virginia "Human Genome Education Model Program"
The HuGEM Project. Georgetown University Child Development Center, Washington, DC and The Alliance of Genetic Support Groups, Chevy Chase, MD. (Six videos: titles listed below)



Palincsar, L. et al. Human Genome Education Model Project Video Manual. Georgetown University Child Development Center, Washington, DC and The Alliance of Genetic Support Groups, Chevy Chase, MD. Georgetown University. 1996.

Lapham, E.V. and J.O. Weiss. "Ethical, Legal, and Social Implications of the Human Genome Project: Education of Interdisciplinary Professionals Meeting Proceedings." Human Genome Education Model Project. Georgetown University. Washington, DC. June 10, 1996.

Lapham EV, Kozma C, Weiss JO (1996). Genetic Discrimination: Perspectives of Consumers. Science, 274: 621-624.

Lapham, E.V., T. Long and C. Kozma. "New Genetics: The Human Genome Project." PT Magazine. March 1999: 78-83.

Kozma, C. and E.V. Lapham. "Nature: Understanding Genetic and Hereditary Influence on Brain Function." Lesson 3 in Nueroscience & Occupation: Links to Practice. C.B. Royeen, Ed.

Lapham EV, Kozma C, Weiss JO, Benkendorf JL, Wilson MA (2000). The Gap Between Practice and Genetics Education of Health Professionals: HuGEM Survey Results. Genet Med, 2(4): 1-6.

LEA, Dale "A Practice-Based Genetics Curriculum for Nurse Educators"
Lea D, Jenkins J (1998). Genetics in Clinical Practice: New Dimensions for Nursing and Health Care Boston: Jones & Bartlett Publishers 352pp.

LEE, Sandra "Distributive Justice in Human Genetic Variation Research"
Lee, SS, Mountain, J, Koenig, BA. The Meanings of Race in the New Genomics. Henderson, Gail E., Sue E, Estroff, Larry R. Churchill, Nancy M.P. King, Jonathan Oberlander, and Ronald P. Strauss (eds), The Social Contributions to Health, Difference and Inequality: The Social Medicine Reader. 2nd Edition, Volume Duke University Press. 2005.

Lee SS, Koenig BA (2003). Racial Profiling of DNA Samples: Will it Affect Scientific Knowledge About Genetic Variation In Knoppers B, Ed., Populations and Genetics: Legal and Socio-Ethical Perspectives (231-244). Leiden: Martinus Nijhoff Publishers.

Lee, SS. Genetics and Racial Minorities. Encyclopedia of Bioethics, 3rd Ed. New York: Macmillan Publishing. p. 2003; 992-996.

Sankar P, Cho M, Condit C, Hunt L, Koenig B, Marshall P, Lee SS, Spicer P (2004). Genetic research and health disparities. JAMA, 291(24): 2985-2989. [PubMed Central]

Lee SS (2004). Paradoxes of Difference. PLoS Biol, 2(9): e263. [PubMed Central]

Lee SS (2005). Personalized medicine and pharmacogenomics: ethical and social challenges. Personalized Med, 2(1): 29-35.

Lee SS (2005). Racializing Drug Design: Pharmacogenomics and Implications for Health Disparities. Am J Public Health, 95(12): 2133-2138. [PubMed]

Lee SS-J. Identifying 'Race' in the New Genetics: Bio-Banks of a Kind. Patterns of Prejudice. Ed. S.L. Gilman. 40(4,5): 443-460. 2006.

Lee SS-J (2006). MEDICINE: The Politics of Hope--Dreaming in a Genomic Age. Science, 313(5795): 1889-1890.

Lee SS-J (2007). The Ethical Implications of Stratifying by Race in Pharmacogenomics. Clinical Pharmocology and Therapeutics, 81(1): 122-125. [PubMed]

Lee SS (2007). Response to: The implications of population admixture in race-based drug prescription. Clin Pharmacol Ther, 82(6): 760.

Koenig B, Lee SS-J, Richardson S. Introduction. In Revisiting Race in a Genomic Age. Eds. B Koenig, SS-J Lee and S Richardson. New Brunswick: Rutgers University Press. [In Press]

Lee SS-J. Racial Realism: Reframing Disparity into Difference. In Revisiting Race in a Genomic Age. Eds. B Koenig, SS-J Lee and S Richardson. New Brunswick: Rutgers University Press. [In Press]

Lee SS, Mountain J, Koenig B, Altman R, Brown M, Camarillo A, Cavalli-Sforza L, Cho M, Eberhardt J, Feldman M, Ford R, Greely H, King R, Markus H, Satz D, Snipp M, Steele C, Underhill P (2008). The Ethics of characterizing Difference: Guiding Principles on Using Racial Categories in Human Genetics. Genome Biol, 9(7): 404.1-4. [PubMed Central]

Lee SS, Mudaliar A (2009). Racing Forward: the Genomics and Personalized Medicine Act. Science, 323(5912): 342. [PubMed]

Caulfield T, Fullerton SM, Ali-Khan SE, Arbour L, Burchard EG, Cooper RS, Hardy BJ, Harry S, Hyde-Lay R, Kahn J, Kittles R, Koenig BA, Lee SS-J, Malinowski M, Ravitsky V, Sankar P, Scherer SW, Séguin B, Shickle D, Suarez-Kurtz G, Daar AS (2009). Race and Ancestry in Biomedical Research: Exploring the Challenges. Genome Med, 1(1): 8.1-8.7. [PubMed Central]

Lee SS (2009). Pharmacogenomics and the Challenge of Health Disparities. Public Health Genomics, 12(3): 170-179. [PubMed]

Lee SS, Crawley L (2009). Research 2.0: Social Networking and DTC Genomics. Am J Bioeth, 9(6-7): 35-44.

Lee SS, Bolnick DB, Duster T, Ossorio P, Tallbear K (2009). The Illusive Gold Standard in Genetic Ancestry Testing. Science, 325: 38-39. [PubMed]

Lee, SS. The Social and Ethical Implications of Pharmacogenomics in Asia. Frameworks of Choice: Predictive and Genetic Testing in Asia Ed. Margaret Sleeboom-Faulkner. Amsterdam University Press. 1 edition (August 2, 2010). 288p.

Lee SS (2012). The Ethics of Nutrigenomics In Chadwick R, Ed, Encyclopedia of Applied Ethics (3500pp). Academic Press.

Lee SS (2012). Ethical, Legal, Social & Regulatory Issues: Privacy/Confidentiality In Altman R, Flockhart D, Goldstein D, (Eds.), Principles of Pharmacogenetics and Pharmacogenomics (304pp). Cambridge University Press.

LEE, Sandra "Ethics of Identifying Race in the New Genetics"
Lee SS, Mountain J, Koenig BA (2001). The Meanings of Race in the New Genomics: Implications for Health Disparities Research. Yale J Health Policy Law Ethics, 1: 33-75. [PubMed]

Lee SS-J (2003). Genetics and Racial Minorities. .

Lee SS-J (2003). Race, Distributive Justice and the Promise of Pharmacogenomics: Ethical Considerations. American Journal of Pharmacogenomics, 3(6): 385-92. [PubMed]

LERMAN, Caryn "Decisions and Outcomes of BRCA1/2 Test for Breast Patients"
Tercyak KP, Peshkin BN, Streisand R, Lerman C (2001). Psychological issues among children of hereditary breast cancer gene (BRCA1/2) testing participants. Psycho-Oncology, 10: 336-346.

DeMarco TA, Peshkin BN, Brogan BM (2001). Across the Spectrum: Case Studies in Genetic Counseling for Breast and Ovarian Cancer. J Genet Couns, 10(5): 379-95. [Full Text]

Isaacs C, Peshkin BN, Schwartz M, DeMarco TA, Main D, Lerman C (2002). Breast and Ovarian Cancer Screening Practices in Healthy Women with a Strong Family History of Breast or Ovarian Cancer. Breast Cancer Research and Treatment, 71(2): 103-12. [PubMed]

Schwartz MD, Peshkin BN, Hughes C, Main D, Isaacs C, Lerman C (2002). Impact of BRCA1/BRCA2 Mutation Testing on Psychologic Distress in a Clinic-Based Sample. J Clin Oncol.

Lerman C, Croyle RT, Tercyak P, Hamann H (2002). Genetic testing: Psychological aspects and implications. Journal of Consulting and Clinical Psychology, 70(3): 784-797.

LESTER, Helen "Medicine at the Crossroads"
"Medicine at the Crossroads: Conceiving the Future." New York: WNET/Thirteen, 1990. (8 part video series.)

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MAGYARI, Trish "Cystic Fibrosis Carrier Screening Educational Materials"
CF Carrier Testing: The Choice is Yours. Silver Spring: Macro International, 1994. (Educational Video)

MAHOWALD, Mary "The Human Genome Project and Women"
Mahowald MB (1993). Women and Children in Health Care: An Unequal Majority New York: Oxford University Press.

Mahowald MB (1993). Toward Gender Justice in Genetics In Proceedings of the International Social Philosophy Conference. Helsinki, Finland: University of Helsinki.

Mahowald MB (1994). Reproductive Genetics and Gender Justice In Rothenberg K, Thompson E, eds., Women and Prenatal Testing: Facing the Challenges of Genetic Technology (304p.). Columbus: Ohio State University.

Lester L et al (1995). The Human Genome Project and Women: Cystic Fibrosis, a Case Study. J Womens Health, 4: 623-635.

Mahowald MB et al (1996). The New Genetics and Women. Milbank Q, 74: 239-283.

Ravin AJ, Mahowald MB, Stocking CB (1997). Genes or Gestation? Attitudes of Women and Men about Biologic Ties to Children. J Womens Health, 6(6): 639-647.

Mahowald MB Ed. and author (1997). "The Human Genome Project and Women." and "Gender Justice in Genetics.". Women's Health Issues, 7(4): 281p..

MALEY, Julie "An Educational Ethics Casebook for Genetic Counseling"
Maley, J.A. and ad hoc Committee on Ethical Codes and Principles, NSGC. An Ethics Casebook for Genetic Counselors. Charlottesville, Virginia: University of Virginia, 1994.

MARCHANT, Gary "Genetic Susceptibility and Environmental Regulation"
Markel H (1997). Quarantine! East European Jewish Immigrants and the New York City Epidemics of 1892 Baltimore, Maryland: The Johns Hopkins University Press 262p.

Marchant G (2003). Genomics and Toxic Substances: part II - Toxicogenetics. Environmental Law Reporter, 33: 10641-10667.

Sharp RR, Udell MA, Wilson SH (2004). Shaping Science Policy in the Age of Genomics. Nat Rev Genet, 5: 311-316. [PubMed]

Grodsky JA (2005). Genetics and Environmental Law: Redefining Public Health. California Law Review, 93: 171-270.

Marchant G (2006). FORTHCOMINGGenetic Data in Toxic Tort Litigation. Law and Policy.

Silver, K., Sharp, R.R. "Ethics Considerations in Testing Workers for the Glu69 Marker of Genetic Susceptibility to Chronic Beryllium Disease.7quot; Journal of Occupational and Environmental Medicine [Forthcoming 2006].

Ethics Considerations in Testing Workers for the Glu69 Marker of Genetic Susceptibility to Chronic Beryllium Disease.7quot; Journal of Occupational and Environmental Medicine [Forthcoming 2006].

MARKEL, Howard ""The Stigma of Disease: Implications of Genetic Testing""
Markel H (1992). The Stigma of Disease: Implications of Genetic Screening. American Journal of Medicine, 93(2): 209-15. [PubMed]

Markel H (1995). Knocking out the Cholera': Cholera, Class, and Quarantines in New York City, 1892. Bull Hist Med, 69: 420-457.

Markel H (1997). Di Goldine Medina (The Golden Land): Historical Perspectives of Eugenics and the East European (Ashkenzai) Jewish-American Community, 1880-1925. Health Matrix Clevel, 7(1): 49-64.

Marchant G (2003). Genomics & Toxic Substances: Part II-Toxicogenetics. Environmental Law Reporter, 33: 10641-10667.

MARSHALL, Patricia "Consent in Genetic Research: An International Trial"
Marshall P (2006). Commentary: Politics, Culture and governance in the Development of Prior Informed Consent in Indigenous Communities. Current Anthropology, 47(1): 119-42. [PubMed Central]

Marshall P (2006). Informed consent in international health research. Journal of Empirical Research on Human-Research Ethics, 1(1): 25-42.

Marshall PA, Adebamowo CA et al (2006). Voluntary Participation and Informed Consent to International Genetic Research. Am J Public Health, 96(11): 1989-1995. [PubMed]

Marshall P (2008). Cultural Competence and Informed Consent in International Health Research. Camb Q Healthc Ethics, 17(2): 206-15. [PubMed]

Rotimi C, Marshall P (2010). Tailoring the process of informed consent in genetic and genomic research. Genome Med, 2(3): 20. [PubMed]

MEHLMAN, Maxwell "Access to the Genome: Justice at the Frontier of Science"
Mehlman M, Botkin J, Scarrow A (1994). Coverage of genetic technology under national health reform. Am J Hum Genet, 55: 1054-1060.

Botkin JR, Croyle RT, Smith KR, Baty BJ, Lerman C, Goldgar DE, Ward JM, Flick BJ, Nash JE et al (1996). A model protocol for evaluating the behavioral and psychosocial effects of BRCA1 testing. J Natl Cancer Inst, 88: 872-882. [PubMed]

Mehlman MJ, Visocan K (1992). Medicare and Medicaid: Are They Just Health Care Systems?. Houston Law Review, 29(4): 835-.

Mehlman MJ, Botkin JR (1998). Access to the Genome: The Challenge to Equality Washington, DC: Georgetown University Press 152p.

Botkin J, McMahon W, Francis L eds (1999). Genetics and Criminality: The Potential Misuse of Scientific Information in Court : The American Psychological Association Press.

MEISLER, Miriam "Genome Center Education Program"
Gregory P, Collins FS (1992). Assessment of High School Student Attitudes toward the Human Genome Project. Am J Hum Genet, 51(4): A140.

MERZ, Jon "Informed Consent to DNA Banking for Research"
Merz JF, Cho MK, Sankar P (1998). Familial disclosure in defiance of nonconsent. Am J Hum Genet, 63: 898-899.

Merz JF (1998). IRB review: necessary, nice, or needless?. Annals of Epidemiology, 8: 479-481.

Merz JF, Leonard DGB, Miller ER (1999). IRB review and consent in human tissue research. Science, 283: 1647-1648.

Beskow LM, Burke W, Merz JF et al (2001). Informed consent for population-based research involving genetics. J Am Med Assoc, 286(18): 2315-2321.

Merz JF (2002). The ethics of research on informed consent. Controlled Clinical Trials, 23(2): 172-177.

MICKLOS, David "Digital Image Archive on the American Eugenics Movement"
Micklos D, Carlson E (2000). Engineering American Society: The Lesson of Eugenics. Nat Rev Genet, 1(2): 153-58. [PubMed]

Image Archive on the American Eugenics Movement.

Levitt, M.L. "Ethical Issues in Constructing a Eugenics Web Site." In M. BehrndeKlodt and P. Wosh eds., Privacy and Confidentiality Reader. Chicago: Society of American Archivists. (In press).

MIESFELDT, Susan "Attitudes About Hereditary Breast Cancer"
Meisfeldt S, Jones S, Cohn W, Ropka M (2002). Knowledge about Breast Cancer Risk Factors and Hereditary Breast Cancer among Women with Early-Onset Breast Cancer. Familial Cancer, 1: 135-141.

UVA Health System. "Are you at risk for hereditary breast cancer?" Family History Brochure and Companion Guide for Health Care Providers. 2003 The University of Virginia.

Miesfeldt S, Cohn WF, Jones SM et al (2003). Breast cancer survivors' attitudes about communication of breast cancer risk to their children. Am J Med Genet, C 119C(1): 45-50.

MILLER, Suzanne "Facilitating Well-Informed Decisions for BRCA Testing"
Shoda Y, Mischel W, Miller SM, Diefenbach MA, Daly M, Engstrom P (1998). Psychological interventions and genetic testing: Facilitating informed decisions about BRCA1/2 cancer susceptibility. Journal of Clinical Psychology in Medical Settings, 5: 3-17.

Miller SM, Diefenbach MA (1998). The Cognitive-Social Health Information Processing (C-SHIP) model: A theoretical framework for research in behavioral oncology In Krantz, Baum A, (Eds.), Technology and methodology in behavioral medicine. NJ: Lawrence Erlbaum.

Bruner DW, Baffoe-Bonnie A, Miller SM et al (1999). A prostate cancer risk assessment program: A model for early detection of prostate cancer. Oncology, 13: 325-334.

Diefenbach M, Miller SM, Daly M (1999). Specific worry about breast cancer predicts mammography use in women at risk for breast and ovarian cancer. Health Psychol, 18: 532-6.

Miller SM, Green V, Bales CB (1999). What you don't know can hurt you: A cognitive-social framework for understanding children's responses to risk In Lewis M, Ramsay D, (Eds.), Soothing and Stress. NJ: Lawrence Erlbaum.

Miller SM, Buzaglo JS, Simms SL, Green V, Bales C, Mangan CE, Sedlacek TV (1999). Monitoring styles in women at risk for cervical cancer: implications for the framing of health-relevant messages. Annals of Behavioral Medicine, 21(1): 27-34. [PubMed]

Miller SM, Diefenbach MA (2000). Stress and coping in the cancer context In Lewis M, Haviland J, (Eds.), Handbook of Emotion: Second Edition. New York, NY: The Guilford Press.

Miller SM, Diefenbach MA, Kruus L, Ohls L, Hanks G, Bruner D, Baffoe-Bonnie A, Engstrom PE (2001). Psychological and screening profiles of first degree relatives of prostate cancer patients. Journal of Behavioral Medicine, 24: 247-258.

Hurley KE, Miller SM, Costalas JW, Daly MB (2001). Anxiety/uncertainty reduction as a motivation for interest in prophylactic oophorectomy in women with a family history of ovarian cancer. J Womens Health Gend Based Med, 10: 189-199.

Miller SM, Fang CY, Diefenbach MA, Bales C (2002). Tailoring psychosocial interventions to the individual's health information processing style: The influence of monitoring versus blunting in cancer risk and disease In Baum A, Andersen B, (Eds.), Psychosocial interventions in cancer. Washington D.C.: American Psychological Association.

Miller SM, Sherman K, Rodoletz M et (2002). The role of monitoring and anticipated BRCA1/2 carrier status on family communication intentions and plans among women with a hereditary pattern for breast/ovarian cancer. Psychosom Med, 64(1): 90.

Daly MB, Barsevick A, Miller SM et al (2001). Communicating genetic test results to the family: A six-step, skills-building strategy. Fam Community Health, 24(3): 13-26.

Fang CF, Miller SM, Daly M, Hurley K (2002). The influence of coping style and risk perceptions on decisions to undergo prophylactic oophorectomy among FDRs. Psychol Health, 17(3): 365-376.

MOSELEY, Ray "Insurance Implications of a Complete Human Genome Map"
Crandall LA, Moseley RE (1991). Public Policy Implications of Scientific Research: The Human Genome Initiative and the Future of Insurance. The New Biologist, 3(12): 1135-1136.

Moseley RE, Crandall LA, Dewar MA et al (1991). Ethical Implications of a Complete Human Gene Map. Business and Professional Ethics, 10(4): 1-14.

Dewar, M.A., R.E. Moseley, H. Ostrer et al. "Genetic Screening by Insurance Carriers." (Letter) JAMA. March 1992; 267(9): 1207-1208.

McCrary SV, Allen WL, Moseley RE et al (1993). Ethical and Practical Implications of the Human Genome Initiative for Family Medicine. Arch Fam Med, 2(11): 1158-1163.

Ostrer H, Allen WL, Crandall LA et al (1993). Insurance and Genetic Testing: Where Are We Now?. Am J Hum Genet, 52: 565-577.

McCrary SV, Allen WL (1994). The Human Genome Initiative and Primary Care In Monagle JF, Thomama DC, eds., Ethics: Critical Issues for Today's Health Professional (447p.). Gaithersburg, Maryland: Aspen Publishers.

MOULTON, Benjamin "DNA Fingerprinting and Civil Liberties"
Maclin T (2005). Is Obtaining an Arrestee's DNA a Valid Special Needs Search Under the Fourth Amendment? What Should (and Will) the Supreme Court Do? Regulation of Biobanks. Journal of Law Medicine & Ethics, 33(1): 102-24. [PubMed]

Simoncelli T, Steinhardt B (2002). California's Proposition 69: A Dangerous Precedent for Criminal DNA Databases. Expert Testimony: Bridging Bioethics and Evidence Law. J Law Med Ethics, 33(2): 279-293. [PubMed]

Noble AA, Moulton BW eds (2006). DNA Fingerprinting and Civil Liberties. J Law Med Ethics, 34(2): 171-475.

MURRAY, Jeff "ELSI Core for the Cooperative Human Linkage Center (CHLC)"
Weir RF, Horton JR (1995). DNA banking and informed consent -- part 1. IRB, 17(4): 1-4. [PubMed]

Weir RF, Horton JR (1995). DNA banking and informed consent -- part 2. IRB, 17(5&6): 1-8. [PubMed]

MURRAY, Thomas "Ethical Decision Making for Newborn Genetic Screening"
Botkin JR (2005). Research for Newborn Screening: Developing a National Framework. Pediatrics, 116(4): 862-71. [PubMed]

Botkin JR, Clayton EW, Fost NC, Burke W, Murray TH, Baily AM, Wilfond B, Berg A, Ross LF (2006). Newborn Screening Technology: Proceed With Caution. Pediatrics, 117(5): 1793-1805. [PubMed]

MURRAY, Thomas "The Human Genome Initiative and Access to Health Care"
Murray TH (1992). Genetics and the Moral Mission of Health Insurance. Hastings Cent Rep, 22(6): 12-17.

Murray TH (1993). Ethics, Genetic Prediction, and Heart Disease. American Journal of Cardiology, 72(10): 80D-84D. [PubMed]

Murray, T.H., M.A. Rothstein, and R.F. Murray, Jr. The Human Genome Project and the Future of Health Care. Bloomington, IN: Indiana University Press, 1996.

Murray TH (1997). Genetic Exceptionalism and 'Future Diaries': Is Genetic Information Different from Other Medical Information In Rothstein MA, Ed., Genetic Secrets: Protecting Privacy and Confidentiality in the Genetic Era. New Haven: Yale University Press.

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NELKIN, Dorothy "Human Heredity in American Popular Culture"
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PAGE, David "Human Genome Project: Science, Law, and Social Change"
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PETERSEN, Gloria "Gene Tests for Colon Cancer Risk: Psychosocial Studies"
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PHELAN, Jo "Genes, Disease and Stigma: A Study of Public Attitudes and Beliefs"
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PHILLIPS, John "Cystic Fibrosis Screening: An Alternative Paradigm"
Campbell PW, Phillips JA (1992). The Cystic Fibrosis Gene and Relationships to Clinical Status. Seminars in Respiratory Infections, 7: 150-157.

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Parker, R.A. and J.A. Phillips, III. "Population Screening for Carrier Status: Effects of Test Limitations on Precision of Carrier Prevalence Sites." American Journal of Medical Genetics. 1994; 49: 317-322

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POST, Stephen "Ethics, Genetics and Alzheimer Disease"
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Relkin N et al (1996). Apolipoprotein E Genotyping in Alzheimer's Disease: A Consensus Statement. Lancet, 347(9008): 1091-1095.

Post SG (1996). Ethical Aspects of Geriatric Care In Jahnigan DW, Schrier RW, Geriatric Medicine (pp. 245-255). Blackwell Publications.

Post SG (1996). People with Dementia: A Moral Challenge In Thomasma DC, Kushner T, eds., Birth to Death: Science and Bioethics. Cambridge, U.K.: Cambridge University Press.

Lynn J, Marson DL, Post SG, Odenheimer GL (1996). Legal and Ethical Dilemmas in Alzheimer's Care. Patient Care, 30(20): 44-61.

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Winblad B, Hill S, Beermann B, Post SG, Wimo A (1997). Issues in the Economic Evaluation of Treatment for Dementia. Alzheimer Dis Assoc Disord, 11(Suppl. 3): 39-44.

Post SG, Beerman B, Brodaty H et al (1997). Ethical Issues in Dementia Drug Development: Position Paper from the International Working Group on Harmonization of Dementia Drug Guidelines. Alzheimer Dis Assoc Disord, 11(Suppl. 3): 26-28.

Post SG (1997). Physician-Assisted Suicide in Alzheimer Disease. Journal of the American Geriatrics Society, 45: 647-651.

Post, S.G., "Slowing the Progression of Dementia: Ethical Issues" Alzheimer Disease and Associated Disorders. 1997; 11(Suppl. 5): 34-36 [General Discussion by P. Leber et al. pp. 37-39).

Post SG (1997). Resource Allocation and Societal Responses to Old Age: The Case of Alzheimer Disease. Ageing Soc, 17(1): 83-85.

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Post, S.G. et al. Ethics Considerations Series for National Dissemination, Alzheimer's Disease & Related Disorders Association. (adopted from the Fairhill Guidelines on Ethics in the Care of People with Alzheimer's Disease, S.G. Post, Principal Investigator). Chicago: National Alzheimer's Association, 1997.

Post, S.G., P.J. Whitehouse, R.H. Binstock et al. "The Clinical Introduction of Genetic Testing for Alzheimer Disease: An Ethical Perspective." JAMA. March 12, 1997; 277(10): 832-836. [Reply to Letters, JAMA, 278(12): 979.]

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Post SG (1998). The Fear of Forgetfulness: A Grassroots Approach to Alzheimer Disease Ethics. Journal of Clinical Ethics, 9(1): 71-80.

Post SG, Whitehouse PJ (1998). Emerging Anti-Dementia Drugs: A Preliminary Ethical View. Journal of the American Geriatrics Society, 46(6): 784-787.

Thomas AM, Cohen G, Cook-Deegan RM, O'Sullivan J, Post SG, Roses AD, Schaffner KF, Green RM (1998). Alzheimer Testing at Silver Years. Camb Q Healthc Ethics, 7(3): 294-307. [PubMed]

Post SG (1998). Ethical Considerations in Pharmacoeconomics and Dementia In Wimo A, ed., Health Economics of Dementia. San Diego: John Wiley and Sons.

Post SG (1998). Social and Ethical Considerations In Gauthier S, Ed., Pharmacotherapy of Alzheimer's Disease. London: Martin Dunitz, Ltd.

Post SG (1999). Future Scenarios for the Prevention and Delay of Alzheimer Disease Onset in High Risk Groups - An Ethical Perspective. Am J Prev Med, 16(2): 105-110.

Post SG (2000). The Concept of Alzheimer Disease in a Hypercognitive Society In Maurer K, Whitehouse PJ, Ballenger JF, eds., Concepts of Alzheimer Disease: Biological, Clinical, and Cultural Perspectives (312p.). Baltimore: Johns Hopkins University Press.

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PRESS, Nancy "Family Disclosure of Cancer Risk: An Ethnographic Study"
Press NA, Fishman JR, Koenig BA (2000). Collective Fear, Individualized Risk: The Social and Cultural Context of Genetic Testing for Breast Cancer. Nursing Ethics, 7(3): 237-49. [PubMed]

Press N, Reynolds S, Pinsky L, Murthy V, Leo M, Burke W (2005). That's like chopping off a finger because you're afraid it might get broken: Disease and illness in women's views of prophylactic mastectomy. Soc Sci Med, 61(5): 1106-17. [PubMed]

PROCTOR, Robert "Cancer and the Human Genome: Ethical Implications"
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PROWS, Cynthia "Summer Genetics Program for Nursing Faculty"
Prows, C.A. and C. Hetteberg. Genetics Program for Nursing Faculty Newsletter: A Focus on Educational Resources. 1998; 1(1): 1-5

Prows, C.A. and C. Hetteberg. Genetics Program for Nursing Faculty Newsletter: A Focus on Educational Resources. 1998; 1(2): 1-3.

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RAU, Richard "DNA Forensics Science: An Update--Supplement"
National Research Council. The Evaluation of Forensic DNA Evidence. Washington, DC: National Academy Press, 1996.

ROBERTSON, John "Preimplantation genetic diagnosis & genetic modification"
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ROTHSTEIN, Mark "Genetic Information and Life Insurance Underwriting"
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ROTHSTEIN, Mark "Genetic Ties and the Future of the Family"
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ROTHSTEIN, Mark "Legal and Ethical Issues Raised by the Human Genome Project"
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ROTHSTEIN, Mark "Pharmacogenomics and Minority Populations"
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ROTHSTEIN, Mark "Genetic Ties and the Future of the Family"
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ROYAL, Charmaine "Center on Genomics and Social Identity in the African Diaspora"
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SAGOFF, Mark "Concepts of Nature, Biotechnology, and the Human Genome"
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Sagoff M (2002). Are Genes Inventions? An Ethical Analysis of Gene Patents In Burley J, Harris J, A Companion to Genethics (p. 420-37). Oxford: Blackwell Publishers.

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Wasserman D (2003). This Old House: The Human Genome and Human Body as Objects of Historic Preservation. Politics Life Sci, 22(1): 43-47.

Gehring, V. (ed) "Genetic Prospects: Essays on Biotechnology, Ethics, and Public Policy." Institute for Philosophy and Public Policy Studies. Rowman & Littlefield Publishers, August 2003.

SANKAR, Pamela "Advancing the Race Dialog: Genes, Forensics & Medicine"
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SANKAR, Pamela "Beyond stigma: Interpreting Genetic Difference"
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SARKAR, Sahotra "Genetic Reductionism--Its Sources and Implications"
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Stern AM (2007). We Cannot Make a Silk Purse Out of a Sow's Ear: Eugenics in the Hoosier Heartland. Indiana Magazine of History, 103(1): 1-38.

SCHNEIDER, William "Research and Application of Genetics Blood Group: 1900-1950"
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SHIELDS, Alexandra "Lay Understanding of Race, Addiction and Genetics"
Shields AE, Blumenthal D, Weiss KB, Comstock CB, Currivan D, Lerman C (2005). Barriers to translating emerging genetic research on smoking into clinical practice: perspectives of primary care physicians. J Gen Intern Med, 20(2): 131-138. [PubMed]

Park E, Kleimann S, Pelan J, Shields AE (2007). Anticipating clinical integration of genetically-tailored tobacco dependence treatment: Perspectives of primary care physicians. Nicotine and Tobacco Research, 9(2): 271-8. [PubMed]

Schnoll R.A., Rukstalis M., Wileyto P. Shields A.E. Practice of smoking cessation treatment by primary care physicians: an update and renewed call for physician training. American Journal of Preventive Medicine. [In Press]

SHOULSON, Ira "Prospective Huntington At Risk Observational Study"
Hogarth P, Kayson E, Kieburtz K, Marder D, Oakes D, Rosas D, Shoulson I, Wexler NS, Young AB, Zhao H (2005). The US-Venezuela Huntington's Disease Collaborative Research Group and the Huntington Study Group. Inter-Rater Agreement in the Assessment of the Motor Manifestations of Huntington's Disease. Mov Dis, 20(3): 293-297.

Huntington Study Group PHAROS Investigators (2006). At risk for Huntington disease: The PHAROS (Prospective Huntington At Risk Observational Study) cohort enrolled. Archives of Neurology, 63(7): 991-6. [PubMed]

Hersch S, Erwin C and the Event Monitoring Committee of the Huntington Study Group. Monitoring reportable events and unanticipated problems: the PHAROS and PREDICT studies of Huntington?s disease. IRB: Ethics & Human Research 29(3): 11-16. 2007. [PubMed]

Oster E, Dorsey ER, Bausch J, Shinaman A, Kayson E, Oakes D, Shoulson I, Quaid K (2008). Fear of health insurance loss among individuals at risk for Huntington disease. Am J Med Genet, 146A(2070-2077). [PubMed]

Quaid, KA, Swenson, MM, Sims, SL, Harrison, JM, Moskowitz, C, Stepanov, N, Suter, GW, Westphal, BJ, Huntington Study Group PHAROS Investigators and Coordinators. What were you thinking?: individuals at risk for Huntington Disease talk about having children. Journal of Genetic Counseling. 19(6):606-17. 2010. [PubMed]

SIDERS, Jane "Genetic Education for Southeastern States (GenESES)"
DeCoux, V. and E.R. Bruton. Genetic Education for Human Service Professionals. Hattiesburg, Mississippi: GenESES Project, Institute for Disability Studies, University of Southern Mississippi. 2000.

SINGER, Eleanor "Beliefs about Genes & Environment as Causes of Behavior"
Singer E, Antonucci T, Van Hoewyk J (2004). Racial and Ethnic Variations in Knowledge and Attitudes about Genetic Testing. Genet Test, 8(1): 31-43. [PubMed]

Singer E, Antonucci TC, Burmeister M, Couper MP, Raghunathan TE, Van Hoewyk J. Beliefs about Genes and Environment as Determinants of Behavioral Characteristics. Forthcoming in IJPOR.

SINGER, Eleanor "Framing Effects in Causal Attributions of Behavior"
Couper MP, Tourangeau R, Conrad FG, Singer E (2006). Evaluating the Effectiveness of Visual Analog Scales: A Web Experiment. Social Science Computer Review, 24: 227-245.

Singer E, Couper MP, Raghunathan TE, Van Hoewyk J, Antonucci TC (2008). Trends in Attitudes toward Genetic Testing 1990-2004. Public Opin Q, 72(3): 446-58. [PubMed]

SINGER, Eleanor "Technology and Social Change: The Impact of Genetic Forecasting on Attitudes and Values"
Singer E (1991). Public Attitudes Toward Genetic Testing. Population Research and Policy Review, 10(3): 235-255.

Singer E (1993). Public Attitudes Toward Fetal Diagnosis and the Termination of Life. Social Indicators Research, 28(117-136).

SKINNER, Debra "Culture and Family Interpretation of Genetic Disorders"
Skinner, D. Culture and Family Interpretations of Genetic Disorders Web site. [fpg.unc.edu]

Skinner D, Schaffer R (2006). Families and Genetic Diagnoses in the Genomic and Internet Age. Infants & Young Children, 19(1): 16724.

Raspberry K, Skinner D (2007). Experiencing the genetic body: Parents? encounters with pediatric clinical genetics. Med Anthropol, 26(4): 355-391. [PubMed]

Schaffer R, Kuczynski K, Skinner D (2008). Producing genetic knowledge and citizenship through the Internet: Mothers, pediatric genetics, and cybermedicine. Sociology of Health and Illness, 30(1): 145-149. [PubMed]

SMITH, David "Ethical Guidance for Family Studies in Human Genetics"
Quaid KA, Wesson MK (1995). Exploration of the Effects of Predictive Testing for Huntington Disease on Intimate Relationships. Am J Med Genet, 57: 46-51.

Smith DH, Quaid KA, Dworkin RB et al (1998). >Early Warning: Cases and Ethical Guidance for Presymptomatic Testing in Genetic Diseases Bloomington, Indiana: Indiana University Press 188 p..

SMITH, Edward "Tuskegee Genome Conference"
Smith EJ, Sapp WJ eds (1997). Plain Talk about the Human Genome Project Tuskegee, Alabama: Tuskegee University.

SORENSON, James "An Evaluation of Testing and Counseling for CF Carriers"
Genetic Counseling for CF Carriers. Parts I & II. (An educational videotape to be used in conjunction with genetic counseling on cystic fibrosis testing.) Chapel Hill: University of North Carolina, 1992.

Sorenson JR, Cheuvront B (1993). The Human Genome Project and Health Behavior and Health Education Research. Health Education Research, 8(4): 589-593.

Callanan NP et al (1995). CF Carrier Testing: Experience of Relatives. J Genet Couns, 4(2): 83-95.

Sorensen JR et al (1996). Proband and Parent Assistance in Identifying Relatives for Cystic Fibrosis Carrier Testing. Am J Med Genet, 63(3): 419-425.

Sorenson JR et al (1997). Acceptance of Home and Genetic Clinic Cystic Fibrosis Carrier Education and Testing by First, Second, and Third Degree Relatives of CF Patients. Am J Med Genet, 70(2): 121-129.

Cheuvront B, Sorenson JR, Callanan NP et al (1998). Psychosocial and educational outcomes associated with home- and clinic-based pretest education and cystic fibrosis carrier testing among a population of at-risk relatives. Am J Med Genet, 75(5): 461-468.

Callanan NP, Cheuvront BJ, Sorenson JR (1999). CF Carrier testing in a high risk population: Anxiety, risk perceptions, and reproductive plans of carrier by "non-carrier" couples. Genet Med, 1(7): 323-7.

Newman JE, Sorenson JR, DeVellis BM, Cheuvront B (2002). Gender differences in psychosocial reactions to cystic fibrosis carrier testing. Am J Med Genet, 113(2): 151-157.

SORENSON, James "An Experimental Study to Improve Risk/Benefit Appraisal"
Sorenson JR, Lakon C, Spinney T, Jennings-Grant T (2004). Assessment of a decision aid to assist genetic testing research participants in the informed consent process. Genet Test, 8(3): 336-346.

Griffith JM, Sorenson JR, Jennings-Grant T, Fowler B. "Development of an interactive computer-assisted instruction (ICAI) program for patient prenatal genetic screening and carrier testing for use in clinical settings." Patient Education and Counseling. (In pressavailable online December 2004)

SORENSON, James "Hemophilia 'A' Carrier Testing--Acceptance and Reactions"
Sorenson JR, Jennings-Grant T, Newman J. "Communication about carrier testing within hemophilia A families." American Journal of Medical Genetics Part C-Seminars in Medical Genetics. MAY 15 2003; 119C (1): 3-1

SPICER, Paul "The Promises and Pitfalls of Native Genetic Research"
Buchwald D, Mendoza-Jenkins V, Croy C, McGough H, Bezdek M, Spicer P (2006). Attitudes of urban American Indians and Alaska Natives regarding participation in research. J Gen Intern Med, 21(6): 648-51. [PubMed]

STOWE, Matthew "A Framework for Disability Perspectives on HGP"
Stowe MJ, Turnbull HR, Pence R, Rack J, Schrandt S, Laub L (2007). The Importance of Attitudes Toward and Understanding of Disability and Science in the Age of Genetics. Research and Practice for Persons with Severe Disabilities, 32(3): 190-206.

Stowe M, Turnbull R, Schrandt M, Rack J (2007). Looking to the Future: Intellectual and Developmental Disabilities in the Genetics Era. Journal on Developmental Disabilities, 13(2): 1-64.

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TEICH, Albert "Ethical and Legal Implications of Genetic Testing"
Conference Proceedings: The Genome, Ethics, and the Law: Issues in Genetic Testing. Washington, DC: AAAS (publication Number 92-11S), 1992. 124p.

Frankel M, Teich A (1993). Ethical and Legal Issues in Pedigree Research Washington, DC: AAAS 216p..

Frankel M, Teich A eds (1994). The Genetic Frontier: Ethics, Law and Policy Washington, DC: AAAS 240p..

TERCYAK, Kenneth "Parent Communication of BRCA1/2 Test Results to Children"
Tercyak KP, Peshkin BN, Demarco TA et al (2007). Information Needs of Mothers Regarding Communicating BRCA1/2 Cancer Genetic Test Results to Their Children. Genet Test, 11(3): 249-255. [PubMed]

Peshkin BN, DeMarco TA, Garber JE et al (2008). Brief Assessment of Parents' Attitudes Toward Testing Minor Children for Hereditary Breast/Ovarian Cancer Genes: Development and Validation of the Pediatric BRCA1/2 Testing Attitudes Scale (P-TAS). J Pediatr Psychol. [PubMed]

DeMarco TA, Peshkin BN, Valdimarsdottir HB, Patenaude AF, Schneider KA, Tercyak KP (2008). Role of Parenting Relationship Quality in Communicating about Maternal BRCA1/2 Genetic Test Results with Children. J Genet Couns, 17: 283-287. [PubMed Central]

Tercyak KP (2009). Introduction to the special issue: psychological aspects of genomics and child health. J Pediatr Psychol, 34(6): 589-595. [PubMed]

O'Neill SC, Peshkin BN, Luta G, Abraham A, Walker LR, Tercyak KP (2010). Primary care providers' willingness to recommend BRCA1/2 testing to adolescents. Familial Cancer, 9(1): 43-50. [PubMed]

Tercyak KP, Alford SH, Emmons KM, Lipkus IM, Wilfond BS, McBride CM (2011). Parents' Attitudes Toward Pediatric Genetic Testing for Common Disease Risk. Pediatrics, 127(5): 288-295. [PubMed]

TEXTER, Cardie "The Human Genome Project: Human and Scientific Dimensions"
MCET. The Human Genome Project: Exploring the Human and Scientific Dimensions. (Series of 7 Videos--core of bi-weekly elective biology course). Boston: MCET.

Blatt, R. "The Human Genome Project: Exploring the Scientific and Humanistic Dimensions." (Curriculum Materials). Boston: MCET.

Additional MCET Video Products:


TROTTIER, Ralph "Impact of HGP Derived Technology on Genetic Testing, Screening and Counseling: Cultural, Ethical, and Legal Issues"
Crandall LA (1992). Biomedical Ethics: Challenges from New Technologies In Building Bridges: Strategies for the Future, Proceedings of the 14th Annual Meeting of the Society for Healthcare Planning and Marketing. Chicago: American Hospital Association.

Crandall LA (). Health Care Reform and Payment for 'Non-Beneficial' Medical Interventions at the End of Life: Is There a Policy Solution? In Health Care Crisis? The Search for Answers (pp. 123-34). Frederick, Maryland: University Publishing Group.

James DCS et al (1995). Professional Preparation of Individuals Who Provide Genetic Counseling Services. J Genet Couns, 4: 49-63.

James DCS et al (1995). Roles of Physicians, Genetic Counselors, and Nurses in the Genetic Counseling Process. J Fla Med Assoc, 82(5): 403-10.

Phoenix DA et al (1995). Sickle Cell Screening Policies as Portent: How the Human Genome Project Affects Public-Sector Genetic Services?. J Nat Med Assoc, 87: 807-12.

Trottier RW (1996). Genetics In Public Health: Implications of Genetic Screening/Counseling in Rural/Culturally Diverse Populations In Aronowitz S, Martinsons B, Menser M, Eds., Technoscience and Cyberculture. New York: Routledge Press.

Crandall, L.A. "Genetic Testing and Managed Care: Balancing Individual, Family, and Corporate Interests" in Resources, Rationing, and Responsibility: Ethical Issues in Managed Care (Continuing Education Conference Papers). Indianapolis; Indiana University School of Medicine, Division of Continuing Education, 1996.

Trottier, R.W. and L.A. Crandall. Public Sector Genetic Services: Current Status and Potential Issues Raised by the Human Genome Project. Final Report, Morehouse School of Medicine; Atlanta: October 1996.

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WACHBROIT, Robert "Reassessing Health, Normality, and Confidentiality"
Wasserman D (1993). Disability, Discrimination, and Fairness. Report from the Institute for Philosophy & Public Policy, 13: 7-12.

Wachbroit R (1993). Rethinking Medical Confidentiality: The Impact of Genetics. Suffolk University Law Review, 27(4): 1391-1410.

Wulfsberg EA et al (1994). ;Alpha-Antitrypsic Deficiency: Impact of Genetic Discovery on Medicine and Society. JAMA, 271(3): 217-222.

Hoffmann DE, Wulfsberg EA (1995). Testing Children for Genetic Predispositions: Is it in Their Best Interest?. J Law Med Ethics, 23(4): 331-344.

WAISBREN, Susan "Expanded Newborn Screening for Metabolic Disorders"
Albers S., Levy H.L. "One more thought on sudden infant death syndrome." Pediatrics 2001; 107: 809 (letter).

Albers S, Marsden D, Quackenbush E, Stark AR, Levy HL, Irons M (2001). Detection of neonatal CPT II deficiency by expanded newborn screening. Pediatrics, 107(e103): 1-4.

Albers S, Levy HL, Irons M (2001). Compound heterozygosity in four asymptomatic siblings with medium-chaim acyl-CoA dehydrogenase deficiency. J Inherit Metab Dis, 24: 417-8.

Waisbren S.E., Albers S., Amato S. et al. "Effect of Expanded Newborn Screening for Biochemical Genetic Disorders on Child Outcomes and Parental Stress." JAMA. November 19, 2003; 290(19); 2564-2572. (Holtzman N.A. "Expanding Newborn Screening: How Good Is the Evidence?" Editorial, 2606-2608).

Website: New England Consortium of Metabolic Programs
Highlighted presentations available on the website include: "Newborn Screening: A New Era," by Harvey L. Levy;
"Benchmarks for Fairness in Newborn Screening for Metabolic Disorders," by Susan Waisbren; and "Genetics and Newborn Screening Collaborative," by Thomas Brewster.

Waisbren, S.E., Levy, H.L. "Expanded screening of newborns for genetic disorders." JAMA. 2004; 18;291(7): 820-1; author reply 821. [PubMed]

Waisbren SE, Rones M, Read CY, Marsden D, Levy HL (2004). Brief report: Predictors of parenting stress among parents of children with biochemical genetic disorders. J Pediatr Psychol, 29(7): 565-70. [PubMed]

Gurian EA, Kinnamon DD, Henry JJ, Waisbren SE (2006). Expanded newborn screening for biochemical disorders: The effect of a false-positive result. Pediatrics, 117(6): 1915-21. [PubMed]

WALTERS, LeRoy "DNA Patent Policies at Academic Institutions"
Pressman L, Burgess R, Cook-Deegan RM, McCormack SJ, Nami-Wolk I, Soucy M, Walters L (2006). he licensing of DNA patents by US academic institutions: an empirical survey. Nat Biotechnol, 24(1): 31-39. [PubMed]

WALTERS, LeRoy "National Information Resource on Ethics and Human Genetics"
(1982). A Report on the Social and Ethical Issues of Genetic Engineering with Human Beings In President's Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research (126p). Washington, D.C.: U.S. Government Printing Office.

(1983). President's Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research In Screening and Counseling for Genetic Conditions: a Report on the Ethical, Social, and Legal Implications of Genetic Screening, Counseling, and Education Programs (122p). Washington, D.C: U.S. Government Printing Office.

Durfy SJ, Grotevant AE (1991). The Human Genome Project. Scope Note 17. Kennedy Inst Ethics J, 1(4): 347-362. [Full Text]

McCarrick PM (1993). Genetic Testing and Genetic Screening, Scope Note 22. Kennedy Inst Ethics J, 3(3): 333-354. [Full Text]

Coutts MC (1994). Human Gene Transfer Research, Scope Note 24. Kennedy Inst Ethics Journal, 4(1): 68-83. [Full Text]

Walters L, Kahn TJ (1995). Bibliography of Bioethics, Volume 21 Washington, DC: Kennedy Institute of Ethics, Georgetown University 783p..

Walters, L. and T.J. Kahn eds. "Bibliography of Bioethics, Volume 22." Washington, DC: Kennedy Institute of Ethics, Georgetown University, 1995. 761p.

Coutts MC, McCarrick PM (1995). Eugenics, Scope Note 28. Kennedy Inst Ethics J, 5(2): 163-178. [Full Text]

Walters L, Kahn TJ eds (1997). Bibliography of Bioethics, Volume 23 Washington, DC: Kennedy Institute of Ethics, Georgetown University 774p..

Darragh M, McCarrick PM (1997). Genetics and Ethics: Selections from Updated Scope Notes. Kennedy Inst Ethics J, 7(3): 299-318.

Walters L, Kahn TJ eds (1998). Bibliography of Bioethics, Volume 24 Washington, DC: Kennedy Institute of Ethics, Georgetown University 766p..

Bioethics Information Retrieval Project. "Bioethics Thesaurus." Washington, DC: Kennedy Institute of Ethics, Georgetown University, 1994-1999, annual.

Walters L, Kahn TJ eds (1999). Bibliography of Bioethics, Volume 25 Washington, DC: Kennedy Institute of Ethics, Georgetown University 752p..

WALTERS, LeRoy. National Information Resource on Ethics & Human Genetics Web site. Includes: Genetics and Ethics database, QuickBibs, Digital Collection Project, Organizations, Search Request Form.

Walters L, Kahn TJ eds (2000). Bibliography of Bioethics, Volume 26 Washington, DC: Kennedy Institute of Ethics, Georgetown University 740p..

Bishop LJ, Darragh M, Goldstein D, Huttlinger L, Nolen A (2000). Basic Resources in Bioethics: 1996-1999. Kennedy Inst Ethics J, 10(1): 8-102. [Full Text]

Poland SC (2000). Genes, Patents, and Bioethics - Will History Repeat Itself?. Kennedy Inst Ethics J, 10(3): 265-281. [Full Text]

Walters L, Kahn TJ eds (2001). Bibliography of Bioethics, Volume 27 Washington, DC: Kennedy Institute of Ethics, Georgetown University 675p..

Walters L, Kahn TJ, Goldstein D eds (2002). Bibliography of Bioethics, Volume 28 Washington, DC: Kennedy Institute of Ethics, Georgetown University 765p..

Bishop, L.J. and S.C. Poland. "Bioethics and Cloning, Part I." Scope Note 41. Kennedy Institute of Ethics Journal. 2002 September; 12(3): 305-324.

Poland SC, Bishop LJ (2002). "Bioethics and Cloning, Part II." Scope Note 42. Kennedy Inst Ethics J, 12(4): 391-407.

Walters L, Kahn TJ, Goldstein D (2003). Bibliography of Bioethics, Volume 29 Washington, DC: Kennedy Institute of Ethics, Georgetown University 737p..

Huttlinger, L.F., ed. "New Titles in Bioethics, 1994 to present." Quarterly and annual. From July 2003.

Bishop, L.J., and A.L. Nolen. "Animals in Science and Education." Co-published simultaneously in The Reference Librarian No. 86, 2004, p. 57-70; and: Kistler, John M., ed. "Animals Are the Issue: Library Resources on Animal Issues." Binghamton, NY: The Haworth Press, 2004; pp. 57-70.

Walters L, Kahn TJ, Goldstein D eds (2004). Bibliography of Bioethics, Volume 30 Washington, DC: Kennedy Institute of Ethics, Georgetown University 571p..

"Bioethics Searchers Guides: Using Databases of the National Library of Medicine and National Reference Center for Bioethics Literature." Washington, DC: Kennedy Institute of Ethics, Georgetown University, May 2004. 171 p.

WASSERMAN, David "Genetic Factors in Crime--Findings, Uses & Implications"
Wasserman D (1996). Research into Genetics and Crime: Consensus and Controversy. Politics Life Sci, 15(1): 107-109.

WASSERMAN, David "Genetic Testing, Disabilities, and the Quality of Life"
Wasserman D, Strudler A (2003). Can a Nonconsequentialist Count Lives. Philosophy & Public Affairs, 31(1): 71-94.

Wasserman D, Bickenbach J, Wachbroit R eds (). Quality of Life and Human Difference: Genetic Testing, Health Care, and Disability New York, New York: Cambridge University Press 273 p..

WERTZ, Dorothy "Ethics and Genetics: A Survey of Approaches in the US and Canada"
Wertz DC (1992). Ethical and Legal Implications of the New Genetics: Issues for Discussion. Soc Sci Med, 35(4): 495-50.

Wertz DC, Fletcher JC (1993). A Critique of Some Feminist Challenges to Prenatal Diagnosis. J Womens Health, 2(2): 173-188. [Full Text]

Wertz DC (1993). Provider Biases and Choices: The Role of Gender. Clinical Obstetrics and Gynecology, 36(3): 521-531.

Wertz DC, Fletcher JC (1993). Feminist Criticism of Prenatal Diagnosis: A Response. Clinical Obstetrics and Gynecology, 36(3): 541-567. [PubMed]

Wertz DC (1994). Provider Gender and Moral Reasoning: The Politics of an Ethics of Care. J Genet Couns, 3(2): 95-112.

Wertz DC et al (1994). Testing Healthy Children and Adolescents; Recommendations for Avoiding Harm. The Genetic Resource, 8(2): 16-20.

Wertz DC et al (1994). Genetic Testing for Children and Adolescents: Who Decides?. JAMA, 272(11): 875-81. [PubMed]

Wertz DC (1995). Professional Perspectives: A Survey of Canadian Providers. Health Law Journal, 3: 59-130.

Wertz DC (1995). Ethics In Duckett S, Ed., Pediatric Neuropathology. Baltimore: Williams & Wilkins.

Wertz DC, Reilly PR (1997). Laboratory Policies and Practices for the Genetic Testing of Children: A Survey of the Helix Network. Am J Hum Genet, 61: 1163-1168.

Wertz DC (1998). The Difficulties of Recruiting Minorities to Studies of Ethics and Values in Genetics. Community Genet, 1: 175-179.

Wertz DC (1998). Ethical Issues in Pediatric Genetics: Views of Geneticists, Parents, and Primary Care Physicians. Health Law Journal, 6: 1-42.

Wertz DC (1999). Genetic Discrimination: Results of a Survey of Genetics Professionals, Primary Care Physicians, Patients, and Public. Health Law Review, 7(3): 7-8.

Wertz DC (1999). Patient and Professional Views on Autonomy: A Survey in the United States and Canada. Health Law Review, 7(3): 9-10.

Wertz DC (2000). Drawing Lines: Notes for Policymakers In Parens E, Asch A, eds., Prenatal Testing and Disability (261-287). Washington, DC: Georgetown University Press.

WERTZ, Dorothy "Geneticists Approach Ethics: An International Survey"
Wertz DC, Fletcher JC (1993). Proposed: An International Code of Ethics for Medical Genetics. Clin Genet, 44(1): 37-43.

Wertz DC, Fletcher JC (1993). Geneticists Approach Ethics: An International Survey. Clin Genet, 43(2): 104-110. [PubMed]

Wertz DC (1996). Opinions des geneticiens de 37 pays sur la preselection du sexe. Sociologie et societes, XXVIII(2): 77-92.

Wertz DC (1997). International Perspectives on Privacy and Access to Genetic Information. Microb Comp Genomics, 2(1): 53-61.

Cohen PE, Wertz DC, Nippert I, Wolff G (1997). Genetic Counseling Practices in Germany: A Comparison Between East German and West German Geneticists. J Genet Couns, 6(1): 61-80.

Wertz DC (1997). Society and the Not-so-New Genetics: What Are We Afraid of? Some Future Predictions From a Social Scientist. The Journal of Contemporary Health Law and Policy, 13: 299-346.

Mao X, Wertz DC (1997). China's Genetic Services Providers' Attitudes Towards Several Ethical Issues: A Cross-Cultural Survey. Clin Genet, 52: 100-109.

Wertz DC (1997). Is There a Women's 'Ethic' in Genetics: A 37-Nation Survey of Providers. JAMWA, 52(1): 33-38.

Wertz DC, Fletcher JC (1998). Ethical and Social Issues in Prenatal Sex Selection: A Survey on Geneticists in 37 Nations. Soc Sci Med, 46(2): 255. [PubMed]

Wertz DC (1998). Genetic Counseling in Mexico. Am J Med Genet, 75: 424-425. [PubMed]

Lisker R, Carnevale A, Villa JA, Armendares S, Wertz DC (1998). Mexican geneticists' opinions on disclosure issues. Clin Genet, 54: 321-329.

Wertz DC (1998). Eugenics Is Alive and Well: A Survey of Genetic Professionals around the World. Science in Context, 11(3-4): 100-109.

Wertz DC (1998). International Perspectives In Clark AJ, Ed., The Genetic Testing of Children. Oxford: BIOS Scientific Publishers.

Wertz DC (1998). International Research in Bioethics: The Challenges of Cross-Cultural Interpretation In DeVries, Subedi J, eds., Bioethics and Society. Upper Saddle River, New Jersey: Prentice Hall.

Wertz DC (1999). Patients' and Professionals' Views on Autonomy, Disability, and "Discrimination": Results of a 36-Nation Survey In Williams-Jones B, Caulfield T, eds., The Commercialization of Genetic Research. New York: Plenum Press.

Wertz DC (). International Research in Bioethics: The Challenges of Cross-Cultural Interpretation In DeVries R, Subedi J, eds., Bioethics and Society: Constructing the Ethical Enterprise (145-165). New Jersey: Prentice Hall.

Wertz, D.C. "Views of Chinese Medical Geneticists: How they Differ from 35 Other Nations." To appear in: Proceedings of the German Institute for Asian Studies

Wertz DC (2000). Emerging Risks of Genetic Testing. Risk Management Foundation of the Harvard Medical Institutions Forum.

Wertz DC (2002). Testing Children and Adolescents In Burley J, Harris J, eds., A Companion to Genethics (92-113). Malden, Massachusetts: Blackwell Publishers.

Wertz DC, Knoppers BM (2002). Serious Genetic Disorders: Can or Should They Be Defined?. Am J Med Genet, 108: 29-35.

Wertz D, Fletcher J, Nippert I, Wolff G, Ayme S (2002). In Focus: Has Patient Autonomy Gone too Far? Geneticists' Views in 36 Nations. Am J Bioeth, 2(W21): In Focus. [PubMed]

WIKLER, Daniel "Human Genome Research in an Interdependent World"
Capron A (1991). Human Genome Research in an Interdependent World. Kennedy Inst Ethics J, 1(3): 247-51. [PubMed]

WILKINSON, Susann "Biotechnology and the Diagnosis of Genetic Disease"
Biotechnology and the Diagnosis of Genetic Disease: Forum on the Technical, Regulatory and Societal Issues. Final Report. Washington, DC: Georgetown University Medical Center, August 1991. (Consensus Report on FDA's role in regulation of genetic technology.)

WOLF, Susan "Managing Incidental Findings in Human Subjects Research"
Wolf SM, Paradise J, Nelson CA, Kahn JP, Lawrenz F eds (2008). Symposium: Incidental Findings in Human Subjects Research: From Imaging to Genomics. J Law Med Ethics, 36(2): 209-435.

Wolf SM, Lawrenz FP, Nelson CA, Kahn JP, Cho MK, Clayton EW, Fletcher JG, Georgieff MK, Hammerschmidt D, Hudson K, Illes J, Kapur V, Keane MA, Koenig BA, Leroy BS, McFarland EG, Paradise J, Parker LS, Terry SF, Van Ness B, Wilfond BS (2008). Managing Incidental Findings in Human Subjects Research: Analysis and Recommendations. J Law Med Ethics, 36(2): 219-248. [PubMed]

Richardson HS (2008). Incidental Findings and Ancillary-Care Obligations. J Law Med Ethics, 36(2): 256-270. [PubMed]

Wolf SM (2008). Introduction: The Challenge of Incidental Findings. J Law Med Ethics, 36(2): 216-218. [PubMed]

Van Ness B (2008). Genomic Research and Incidental Findings. J Law Med Ethics, 36(2): 292-297. [PubMed]

Siddiki H, Fletcher JG, McFarland B et al (2008). Incidental Findings in CT Colonography: Literature Review and Survey of Current Research Practice. J Law Med Ethics, 36(2): 320-331. [PubMed]

Wilfond BS, Capenter KJ (2008). Incidental Findings in Pediatric Research. J Law Med Ethics, 36(2): 332-340. [PubMed]

Parker LS (2008). The Future of Incidental Findings: Should They be Viewed as Benefits?. J Law Med Ethics, 36(2): 341-351. [PubMed]

Milstein AC (2008). Research Malpractice and the Issue of Incidental Findings. J Law Med Ethics, 36(2): 356-360. [PubMed]

Wolf SM, Paradise J, Caga-anan C (2008). The Law of Incidental Findings in Human Subjects Research: Establishing Researchers' Duties. J Law Med Ethics, 36(2): 361-383. [PubMed]

Lawrenz F, Sobotka S (2008). Empirical Analysis of Current Approaches to Incidental Findings. J Law Med Ethics, 36(2): 249-255. [PubMed Central]

Cho MK (2008). Understanding Incidental Findings in the Context of Genetics and Genomics. J Law Med Ethics, 36(2): 280-85. [PubMed Central]

Nelson CA (2008). Incidental Findings in Magnetic Resonance Imaging (MRI) Brain Research. J Law Med Ethics, 36(2): 315-319. [PubMed Central]

Illes J, Chin VN (2008). Bridging Philosophical and Practical Implications of Incidental Findings in Brain Research. J Law Med Ethics, 36(2): 298-304. [PubMed Central]

Miller FG, Mello MM, Joffe S (2008). Incidental Findings in Human Subjects Research: What Do Investigators Owe Research Participants?. J Law Med Ethics, 36(2): 271-279. [PubMed Central]

Orme NM, Fletcher JG, Siddiki HA et al (2010). Incidental Findings in Imaging Research Evaluating Incidence, Benefit, and Burden. Arch Intern Med, 170(17): 1525-1532. [PubMed]

Fabsitz RR, McGuire A, Sharp Richard R et al (2010). Ethical and Practical Guidelines for Reporting Genetic Research Results to Study Participants: Updated Guidelines From a National Heart, Lung, and Blood Institute Working Group. Circ Cardiovasc Genet, 3(6): 574-580. [PubMed]

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ZABORSKY, Oskar "An Evaluation of the Application of DNA Technology in Forensic Science"
National Research Council. "DNA Technology in Forensic Science." Washington, D.C.: National Academy Press, 1992. 185p.

ZALLEN, Doris "The Human Genome Project: A Choices and Challenges Forum"
"The Human Genome Project: A Choices and Challenges Forum." Blacksburg, Virginia: Virginia Polytechnic Institute, April 1992. (Transcript and Videotape of Plenary session)

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Other ELSI Program Activities

"NIH-DOE ELSI Working Group Task Force on Genetics and Insurance (ITF)"
Project Date: May 1991 to May 1993


"Pre-symptomatic Testing for P53 Mutations"
Two conferences held May 8-9 and November 19, 1991 on the NIH Campus in Bethesda, Maryland. (Co-sponsored by NCI.)


"NIH Cystic Fibrosis Studies Consortium (CFSC) and Consensus Development Conference"
Project Start Date: 9/30/91. Conference Date: April 14-16, 1997.


"Reproductive Genetic Testing: Impact on Women"
Conference held November 21-23, 1991, NIH campus, Bethesda, Maryland.


"Human Subjects in Genetics Research Involving Families: Points to Consider."
Conference held in 1992 on the NIH Campus in Bethesda, Maryland.
(Co-Sponsored by OPRR and NIMH)


"NCHGR/CDC Informed Consent for Genetics Research Using Stored Tissue Samples"
Meeting held July 7 and 8, 1994 on the NIH campus in Bethesda, Maryland.
(Co-sponsored by CDC)


"NIH Cancer Genetic Studies Consortium (CGSC)""
Project Start Date: 9/30/94


"Impact of Genetic Counseling and Testing for Breast Cancer"
Funded by the American Cancer Society grant # PBR-97 (Member of CGSC)
Project period: 1995-1998
The overall goals of these studies are to demonstrate the psychological effects of genetic counseling for women with a family history of breast cancer and the additional psychological impact of genetic testing as it is introduced into clinical counseling approaches.


"NIH-DOE ELSI Working Group Task Force on Genetic Testing"
Project Start Date: April 1995


"NIH-DOE ELSI Working Group and National Action Plan on Breast Cancer Workshop on Genetic Discrimination and Health Insurance."
Meeting was held July 19, 1995 on the NIH Campus in Bethesda, Maryland


"Informed Consent in Research Involving Human Participants Request for Applications and Research Consortium"
September, 1996 (Trans-Agency Initiative)


"NIH-DOE ELSI Working Group and National Action Plan on Breast Cancer Workshop on Genetic Discrimination and the Workplace: Implications for Employment, Insurance and Privacy"
Meeting was held October 4, 1996 in Bethesda, Maryland


"National Human Genome Research Institute and National Action Plan on Breast Cancer Workshop on Privacy and Confidentiality in Genetics Research"
Meeting was held September 16-17, 1997 in Bethesda, Maryland


"National Coalition for Health Professional Education in Genetics"


"Followup Workshop to the Consensus Development Conference on Genetic Testing for CF"
October 15-16, 1997.


"Hereditary Hemochromatosis: Gene Discovery and Policy Meeting"


"Bioethics Education Materials and Resources Subcommittee (BEMARS)"


"Informed Consent in Human Subjects Research"


"Genetic Medicine-Primary Care Faculty Development Program"


"Request for Proposals to Study Iron Overload and Hereditary Hemochromatosis"


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Last Updated: July 29, 2014