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. West African Bioethics Training Program: Raison D'être. Afr J Med Med Sci, 36 Suppl: 35-8. 2007. [PubMed]

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

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

Ogundiran TO, Adebamowo CA. Surgeons' opinions and practice of informed consent in Nigeria. J Med Ethics, 36(12): 741-745. 2010. [Journal of Medical Ethics]

Eyelade OR, Ajuwon AJ, Adebamowo CA. 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. 2011. [PubMed]

Kaye J, Meslin EM, Knoppers BM, Juengst ET, Deschênes M, Cambon-Thomsen A, Chalmers D, De Vries J, Edwards K, Hoppe N, Kent A, Adebamowo C, Marshall P, Kato K. Research priorities. ELSI 2.0 for genomics and society. Science, 336(6082): 673-674. 2012. [PubMed]

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

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

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

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

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

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

Andrews LB. 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.. 1997.

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

Andrews LB. Body Science. ABA J, 83: 44-49. 1997.

Koenig B, Greely HT, McConnell LM, Silverberg HL, Raffin TA. Genetic testing for BRCA1 and BRCA2: recommendations of the Stanford program in genomics, ethics, and society. J Women's Heal, 7(5): 531-545. 1998. [FSI Stanford]

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

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

APPLEBAUM, Paul "Center for ELSI Research on Psychiatric Neurologic and Behavioral Genetics"
Klitzman R, Appelbaum PS, Fyer A, Martinez J, Buquez B, Wynn J, Waldman CR, Phelan J, Parens E, Chung WK. Researchers' views on return of incidental genomic research results: qualitative and quantitative findings. Genet Med, 15(11): 888-895. 2013. [PubMed Central]

Appelbaum PS, Parens E, Waldman CR, Klitzman R, Fyer A, Martinez J, Prince WN 2nd, Chung WK. Models of consent to return of incidental findings in genomic research. Hastings Cent Rep, 44(4): 22-32. 2014. [PubMed]

APPLEBAUM, Paul "Challenges of Informed Consent in Return of Data from Genomic Research"
Klitzman R, Appelbaum PS, Fyer A, Martinez J, Buquez B, Wynn J, Waldman CR, Phelan J, Parens E, Chung WK. Researchers' views on return of incidental genomic research results: qualitative and quantitative findings. Genet Med, 15(11): 888-895. 2013. [PubMed Central]

Appelbaum PS, Parens E, Waldman CR, Klitzman R, Fyer A, Martinez J, Prince WN 2nd, Chung WK. Models of consent to return of incidental findings in genomic research. Hastings Cent Rep, 44(4): 22-32. 2014. [PubMed]

Henderson GE, Wolf SM, Kuczynski KJ, Joffe S, Sharp RR, Parsons DW, Knoppers BM, Yu JH, Appelbaum PS. The challenge of informed consent and return of results in translational genomics: empirical analysis and recommendations. J Law Med Ethics, 42(3): 344-355. 2014. [PubMed]

APPLEBAUM, Paul S. "Center for Research on the Ethical, Legal and Social Implications of Psychiatric"
Appelbaum PS, Parens E, Waldman CR, Klitzman R, Fyer A, Martinez J, Prince WN 2nd, Chung WK. Models of consent to return of incidental findings in genomic research. Hastings Cent Rep, 44(4): 22-32. 2014. [PubMed]

Klitzman R, Abbate KJ, Chung WK, Marder K, Ottman R, Taber KJ, Leu CS, Appelbaum PS. Psychiatrists' views of the genetic bases of mental disorders and behavioral traits and their use of genetic tests. J Nerv Ment Dis, 202(7): 530-538. 2014. [PubMed]

Henderson GE, Wolf SM, Kuczynski KJ, Joffe S, Sharp RR, Parsons DW, Knoppers BM, Yu JH, Appelbaum PS. The challenge of informed consent and return of results in translational genomics: empirical analysis and recommendations. J Law Med Ethics, 42(3): 344-355. 2014. [PubMed]

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

Plaetke R, Thompson I, Sarosdy M, Harris JM, Troyer D, Arar NH. Genetic fieldwork for hereditary prostate cancer studies. Urol Oncol, 7(1): 19-27. 2002. [PubMed]

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

Arar NH, Hazuda HP, Plaetke R et al. 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. 2003.

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

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

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

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

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

Aronowitz RA. Unnatural History: Breast Cancer and American Society. New York City: Cambridge University Press. 366 pp. 2007.

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

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

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

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

ASCH, David "Prescriptive Decision Modeling for Cystic Fibrosis Screening"
Gettig B, Venne V. Clarification Needed to Cystic Fibrosis Model. Am J Obstet Gynecol, 169(5): 1358-9. 1993. [PubMed]

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

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

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

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

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

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

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

Rothschild BB, Estroff SE, Churchill LR. The cultural calculus of consent. Clin Obstet Gynecol, 48(3): 574-94. 2005. [PubMed]

Rothschild BB, Estroff SE, Churchill LR. The cultural calculus of consent. Clin Obstet Gynecol, 48(3): 574-594. 2005. [PubMed]

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

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

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

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

Skinner D, Schaffer R. Families and genetic diagnoses in the genomic and internet age. Infants Young Child, 19(1): 16-24. 2006. [ELSI Publications]

Henderson GE, Easter MM, Zimmer C, King NM, Davis AM, Rothschild BB, Churchill LR, Wilfond BS, Nelson DK. Therapeutic misconception in early phase gene transfer trials. Soc Sci Med, 62(1): 239-253. 2006. [PubMed]

Illes J. 'Pandora's box' of incidental findings in brain imaging research. Nat Clin Pract Neurol, 2(2): 60-61. 2006. [PubMed]

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

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

Sterling R, Henderson GE, Corbie-Smith G. 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. 2006. [PubMed]

Sterling R, Henderson GE, Corbie-Smith G. Public willingness to participate in and public opinions about genetic variation research: a review of the literature. Am J Public Health, 96(11): 1971-1978. 2006. [PubMed]

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

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

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

Skinner D, Weisner TS. Sociocultural studies of families of children with intellectual disabilities. Ment Retard Dev Disabil Res Rev, 13(4): 302-312. 2007. [Wiley Online Library]

Henderson GE, Churchill LR, Davis AM, Easter MM, Grady C, Joffe S, Kass N, King NMP, Lidz CW, Miller FG, Nelson DK, Peppercorn J, Rothschild BB, Sankar P, Wilfond BS, Zimmer Cr. Clinical trials and medical care: defining the therapeutic misconception. PLoS Med, 4(11): e324. 2011. [PubMed Central]

King NMP. 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.. 2006.

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

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

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

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

Bailey DB Jr., Skinner D, Davis AM, Whitmarsh I, Powell C. Ethical, legal, and social concerns about expanding newborn screening: fragile X syndrome as a prototype for emerging issues. Pediatrics, 121(3): e693-e704. 2008. [Pediatrics Publication]

Henderson G, Garrett J, Bussey-Jones J, Moloney ME, Blumenthal C, Corbie-Smith G. Great expectations: views of genetic research participants regarding current and future genetic studies. Genet Med, 10(3): 193-200. 2008. [PubMed]

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

Sterling R. The on-line promotion and sale of nutrigenomic services. Genet Med, 10(11): 784-796. 2008. [PubMed]

Kemper AR, Bailey DB Jr.. Pediatricians' knowledge of and attitudes toward fragile X syndrome screening. Acad Pediatr, 9(2): 114-117. 2009. [PubMed]

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

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

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

Whitmarsh I ed. Biomedical ambiguity: Race, asthma, and the contested meaning of genetic research in the Caribbean. Ithaca, NY: Cornell University Press. 225. 2008.

Van Riper M, Gallo A eds Crane D, Marshall E. Handbook of Families and Health: Interdisciplinary Perspectives. Thousand Oaks: Sage Publications Inc... .

N. King, L. Churchill. Assessing and Comparing Potential Benefits and Risks of Harm. New York: Oxford University Press. 514-516. .

N. King. Genes and TS: What Will They Tell Us? Scientific, Ethical, and Social Implications. Philadelphia, PA: Lippincott Williams & Wilkins.. .

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

BESKOW, Laura Mari "Assessing the Use and Understanding of Certificates of Confidentiality"
Check DK, Wolf LE, Dame LA, Beskow LM. Certificates of confidentiality and informed consent: perspectives of IRB chairs and institutional legal counsel. IRB, 36(1): 1-8. 2014. [PubMed]

BESKOW, Laura Mari "Ethical Approaches to Genotype-Driven Research Recruitment"
Cadigan RJ, Michie M, Henderson G, Davis AM, Beskow LM. 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. 2011. [PubMed]

Michie M, Cadigan RJ, Henderson G, Beskow LM. Am I a control?: genotype-driven research recruitment and self-understandings of study participants. Genet Med, 14(12): 983-989. 2012. [PubMed Central]

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

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

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

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

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

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

Smith SC, Warren NS, Mirsa L. Minority recruitment into the genetic counseling profession. J Genet Counsel, 2(3): 171-181. 1993. [SpringerLink]

Smith ACM. Update on master's genetic counseling training programs: survey of curriculum content and graduate analysis summary. J Genet Counsel, 2(3): 197-211. 1993. [SpringerLink]

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

Punales-Morejon D, Rapp R. Ethnocultural diversity and genetic counseling training: the challenge for a twenty-first century. J Genet Couns, 2(3): 155-158. 1993. [SpringerLink]

BLACKER, Deborah "Genetic Knowledge and Attitudes in Alzheimer's Disease"
Blacker D, Tanzi RE. 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.. 2000.

Blacker D. 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. 2000. [PubMed]

Blacker D. 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. 2000. [PubMed]

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

Tanzi RE, Blacker D. Genetic screening in Alzheimer's disease: usefulness, limits, and future prospects. Generations, 24(1): 58. 2001. [ELSI Publications]

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

Moscarillo TJ, Holt H, Perman M, Goldberg S, Cortellini L, Stoler JM, DeJong W, Miles BJ, Albert MS, Go RC, Blacker D. Knowledge of and attitudes about Alzheimer disease genetics: report of a pilot survey and two focus groups. Community Genet, 10(2): 97-102. 2007. [PubMed]

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

McKinnon WC, Baty BJ, Bennett RL, Magee M, Neufeld-Kaiser WA, Peters KF, Sawyer JC, Schneider KA. Predisposition genetic testing for late-onset disorders in adults. A position paper of the National Society of Genetic Counselors. JAMA, 278(15): 1217-1220. 1997. [PubMed]

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

Smith KR, Zick CD, Mayer RN, Botkin JR. 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. New York, NY: Kluwer Academic/ Plenum Publishers. p.57-70. 1999.

Mayer RN, Smith KR, Zick CD, Botkin JR. 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. New York, NY: Kluwer Academic/ Plenum Publishers. p.41-56. 1999.

Smith KR, West J, Croyle R, Botkin JR. 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. 1999.

Smith KR, West JA, Croyle RT, Botkin JR. 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): 385-392. 1999. [PubMed]

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

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

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

Hamann HA, Croyle RT, Venne VL, Baty BJ, Smith KR, Botkin JR. Attitudes toward genetic testing of children among adults in a Utah-based kindred tested for a BRCA1 mutation. Am J Med Genet, 92(1): 25-32. 2000. [PubMed]

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

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. 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. 2003. [PubMed]

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

Stroup AM, Smith KR. Familial effects of BRCA1 genetic mutation testing: changes in perceived family functioning. Cancer Epidemiol Biomarkers Prev, 16(1): 135-141. 2007. [PubMed]

K. Smith, C. Zick, R. Mayer, J. Botkin. Genetic Information: Acquisition, Access and Control. New York City: Kluwer Academic/ Plenum Publishers. 57-70. .

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BOTKIN, Jeffrey "Methods for Promoting Public Dialogue on the Use of Residual Newborn Screening"
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BOTKIN, Jeffrey "Parent Education about Newborn Screening and Bloodspot Retention"
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BOWEN, Deborah "Counseling Strategies for Breast Cancer Risk"
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McTiernan A, Kuniyuki A, Yasui Y, Bowen D, Burke W, Culver JB, Anderson R, Durfy S. Comparisons of two breast cancer risk estimates in women with a family history of breast cancer. Cancer Epidemiol Biomarkers Prev, 10(4): 333-338. 2001. [PubMed]

McTiernan A, Kuniyuki A, Yasui Y, Bowen D, Burke W, Culver JB, Anderson R, Durfy S. Comparisons of two breast cancer risk estimates in women with a family history of breast cancer. Cancer Epidemiol Biomarkers Prev, 10(4): 333-338. 2001. [PubMed]

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

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

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

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

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

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

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

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

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

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

Helmes AW, Culver JO, Bowen DJ. Results of a randomized study of telephone versus in-person breast cancer risk counseling. Patient Educ Couns, 64(1-3): 96-103. 2006. [PubMed]

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BRANDT-RAUF, Paul "The ELSI of Genetic Testing in the Workplace"
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BROWNER, Carole "Genetic Counseling Strategies with Mexican-Origin Women"
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Balzano S, Preloran HM, Browner CH. 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. 2002.

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

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

Preloran HM, Balzano S, Browner CH. The roles of trust and cross-cultural miscommunication in clinical decision-making. Calif J Health Promot, 1(2): 198-207. 2003.

Preloran HM, Balzano S, and Browner CH. 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. 2004.

Preloran HM, Balzano S, Browner CH. Globalizacion y salud: el impacto de un protocolo medico sin fronteras (Globalization and Health: the impact of a medical protocol without borders). Revista Nual Realidad del Cono Sur, 2(3): 287-304. 2004. [ELSI Publications]

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

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

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BROWNER, Carole "Use of Amniocentesis by Mexicans and Mexican-Americans"
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Preloran HM, Browner CH. 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. 1997.

Preloran HM, Browner CH. Paternidad prenatal: parejas de origen mexicano decidiendo sobre el uso del diagnostico fetal. Rev Anu Investig Folk, 12. 1997. [ELSI Publications]

Preloran HM, Browner CH. Rol de la tradición en las prácticas del embarazo: efectos de la información genética entre Mexicanas residentes en Estados Unidos. Rev Anu Investig Folk, 12: 67-75. 1997. [ELSI Publications]

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

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

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

Browner CH, Preloran HM. 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. Columbus: Ohio State University Press. pp. 368-383. 2000.

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

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

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

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

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

Browner CH, Preloran HM. Expectations, Emotions, and Medical Decision Making: A Case Study on the Use of Amniocentesis. Transcult Psychiatry, 41(4): 427-44. 2004. [PubMed]

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BURHANSSTIPANOV, Linda "Genetic Education for Native Americans"
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Burhansstipanov L, Bemis L, Dignan M, Dukepoo F. Development of a genetics education workshop curriculum for Native American college and university students. Genetics, 158(3): 941-948. 2001. [PubMed]

Burhansstipanov L, Bemis L, Dignan M. Native American Cancer Education: Genetic and Cultural Issues. J Cancer Educ, 16(3): 142-145. 2001. [PubMed]

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

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

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

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

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Gamito EJ, Burhansstipanov L, Krebs LU, Bemis L, Bradley A. The use of an electronic audience response system for data collection. J Cancer Educ, 20(1 Suppl): 80-6. 2005. [PubMed]

Burhansstipanov L, Christopher S, Schumacher SA. Lessons learned from community-based participatory research in Indian country. Cancer Control, 12(Suppl 2): 70-6. 2005. [PubMed]

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

BURKE, Wylie "Evaluating Use of Genetic Information: A Model Process"
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Burke W. Genetic testing. New Engl J Med, 347(23): 1867-75. 2002. [PubMed]

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

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

BURKE, Wylie "Genetic Susceptibility Testing for Breast Cancer"
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Burke W, Press N, Pinsky L. Breast Cancer Genetics from a Primary Care Perspective. Cancer, 80(3): 621-626. 1997.

Press N, Burke W, Durfy S. 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. 1997. [PubMed]

Durfy SJ, Buchanan TE, Burke W. 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. 1998. [PubMed]

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

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

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

Durfy SJ, Bowen DJ, McTiernan A, Sporleder J, Burke W. 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. 1999. [Pubmed]

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

Pinsky LE, Deyo RA. 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. Woburn: Butterworth-Heinemann Medical. 177p. 2000.

Press NA, Burke W. 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. 2000.

Coughlin S, Burke W. 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. New York: Oxford University Press. 639p. 2000.

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

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

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

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

BURKE, Wylie "Genomic Health Care and the Medically Underserved"
Ramsey SD, Burke W, Pinsky L, Clarke L, Newcomb P, Khoury MJ. Family history assessment to detect increased risk for colorectal cancer: conceptual considerations and a preliminary economic analysis. Cancer Epidemiol Biomarkers Prev, 14(11 Pt 1): 2494-2500. 2005. [PubMed Central]

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

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

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

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

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

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

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

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

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

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

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

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

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

Veenstra DL, Harris J, Gibson RL, Rosenfeld M, Burke W, Watts C. 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. 2007. [PubMed]

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

Veenstra DL, Harris J, Gibson RL, Rosenfeld M, Burke W, Watts C. 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. 2007. [PubMed]

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

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

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

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

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

Jaja C, Burke W, Thummel K, Edwards K, Veenstra DL. Cytochrome p450 enzyme polymorphism frequency in indigenous and native american populations: a systematic review. Community Genet, 11(3): 141-149. 2008. [PubMed]

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

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

James RD, Yu JH, Henrikson NB, Bowen DJ, Fullerton SM, Health Disparities Working Group. Strategies and stakeholders: minority recruitment in cancer genetics research. Community Genet, 11(4): 241-249. 2008. [PubMed]

Henrikson NB, Burke W, Veenstra DL. Ancillary risk information and pharmacogenetic tests: social and policy implications. Pharmacogenomics J, 8(2): 85-89. 2008. [PubMed]

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

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

Shields AE, Burke W, Levy DE. Differential use of available genetic tests among primary care physicians in the U.S.: results of a national survey. Genet Med, 10(6): 404-414. 2008. [PubMed Central]

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

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

McGuire AL, Burke W. Raiding the medical commons: an unwelcome side effect of direct-to-consumer personal genome testing. JAMA, 300(22): 2669-2671. 2008. [PubMed Central]

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

Burke W. Clinical validity and clinical utility of genetic tests. Curr Protoc Hum Genet, Chapter 9(Unit 9): 9.15.1-3. 2009. [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. Race and ancestry in biomedical research: exploring the challenges. Genome Med, 1(1): 8. 2009. [PubMed]

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



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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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McGrath BB, Edwards KL. When family means more (or less) than genetics: the intersection of culture, family, and genomics. J Transcult Nurs, 20(3): 270-277. 2009. [PubMed Central]

Laberge A-M, Psaty BM, Hindorff LA, Burke W. Use of Factor V Leiden genetic testing in practice and impact on management. Genet Med, 11(10): 750-756. 2009. [PubMed Central]

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

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Laberge, MA-M, Burke W. Clinical and public health implications of emerging genetic technologies. Semin Nephrol, 30(2): 185-194. 2010. [PubMed Central]

Meacham MC, Starks H, Burke W, Edwards K. Researcher perspectives on disclosure of incidental findings in genetic research. J Empir Res Hum Res Ethics, 5(3): 31-41. 2010. [PubMed Central]

McGuire, Evans BJ, Caulfield T, Burke W. Science and regulation. Regulating direct-to-consumer personal genome testing. Science, 330(6001): 181-182. 2010. [PubMed]

McGuire AL, Burke W. Health system implications of direct-to-consumer personal genome testing. Public Health Genomics, 14(1): 53-58. 2010. [PubMed Central]

Segrest V, James R, Madrid T, Fernandes R. Launching native health leaders: students as community-campus ambassadors. Prog Community Health Partnersh, 4(1): 81-86. 2010. [PubMed Central]

Roth JA, Garrison LP Jr., Burke W, Ramsey SD, Carlson R, Veenstra DL. Stakeholder perspectives on a risk-benefit framework for genetic testing. Public Health Genomics, 14(2): 59-67. 2011. [PubMed Central]

Lemke AA, Smith ME, Wolf WA, Trinidad SB. Broad data sharing in genetic research: views of institutional review board professionals. IRB, 33(3): 1-5. 2011. [PubMed Central]

McGuire AL, Basford M, Dressler LG, Fullerton SM, Koenig BA, Li R, McCarty CA, Ramos E, Smith ME, Somkin CP, Waudby C, Wolf WA, Clayton EW. Ethical and practical challenges of sharing data from genome-wide association studies: the eMERGE Consortium experience. Genome Res, 21(7): 1001-1007. 2011. [PubMed Central]

Tarini BA, Tercyak KP, Wilfond BS. Commentary: children and predictive genomic testing: disease prevention, research protection, and our future. J Pediatr Psychol, 36(10): 1113-1121. 2011. [PubMed]

Tabor HK, Berkman BE, Hull SC, Bamshad MJ. Genomics really gets personal: how exome and whole genome sequencing challenge the ethical framework of human genetics research. Am J Med Genet A, 155A(12): 2916-2924. 2011. [PubMed]

Rohlfs RV, Fullerton SM, Weir BS. Familial identification: population structure and relationship distinguishability. PLoS Genet, 8(2): e1002469. 2012. [PubMed Central]

Guzauskas GF, Hughes DA, Bradley SM, Veenstra DL. A risk-benefit assessment of prasugrel, clopidogrel, and genotype-guided therapy in patients undergoing percutaneous coronary intervention. Clin Pharmacol Ther, 91(5): 829-37. 2012. [PubMed]

Kaye J, Meslin EM, Knoppers BM, Juengst ET, Deschênes M, Cambon-Thomsen A, Chalmers D, De Vries J, Edwards K, Hoppe N, Kent A, Adebamowo C, Marshall P, Kato K.. Research priorities. ELSI 2.0 for genomics and society. Science, 336(6082): 673-674. 2012. [PubMed]

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Burke W, Trinidad SB, Clayton EW. Seeking genetic knowledge: the case for clinical restraint. Hastings Law J, 64(6): 1650-1664. 2013. [PubMed Central]

Burke W, Antommaria AHM, Bennett R, Botkin J, Clayton EW, Henderson GE, Holm IA, Knoppers BM, Press NA, Ross LF, Rothstein MA, Saal H, Uhlmann WR, Wilfond B, Wolf SM, Zimmern R. Recommendations for returning genomic incidental findings? We need to talk!. Genet Med, 15(11): 854-859. 2013. [PubMed Central]

James R, Tsosie R, Sahota P, Parker M, Dillard D, Sylvester I, Lewis J, Klejka J, Muzquiz L, Olsen P, Whitener R, Burke W. Exploring pathways to trust: a tribal perspective on data sharing. Genet Med. 2014.

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FOSTER, Morris "African-American Haplotype Map Engagement and Follow-up (HAPMAP)"
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FOSTER, Morris "ELSI Research in Two Native American Communities"
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Tan FK, Stivers DN, Foster MW, Chakraborty R, Howard RF, Milewicz DM, Arnett FC. Association of microsatellite markers near fibrillin 1 gene on human chromosome 15q with scleroderma in a Native American population. Arthritis Rheum, 41(10): 1729-1737. 1998. [PubMed]

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FOSTER, Morris "Using Third-Party Data in Pedigree and Subgroup Analyses"
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FUJIMURA, Joan "Exploring Population Concepts in Multiethnic Gene-Environment Interaction Studies"
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FULLERTON, Stephanie "Negotiating Complexity: Common Disease & Diverse Genomes"
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GALLO, Agatha "Parents' Interpretation and Use of Genetic Information"
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GELERNTER, Joel "Thai US Drug Dependence Genetics Research Training Grant"
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Geller G, Bernhard BA, Doksum T. Decision-making about breast cancer susceptibility testing: How similar are the attitudes of physicians, nurse practitioners and at-risk women?. J Clin Onc, 16: 2868-2876. 1998.

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Eisinger F, Geller G, Burke WF, Holtzman NA. Cultural basis for differences between American and French clinical recommendations for women at increased risk of breast/ovarian cancer. Lancet, 353: 919-920. 1999.

Eisinger F, Geller G, Burke W, Holtzman NA. Cultural basis for differences between US and French clinical recommendations for women at increased risk of breast and ovarian cancer. Lancet, 353(9156): 919-20. 1999. [PubMed]

James C, Geller G, Bernhardt BA, Docksum T, Holtzman NA. Are practicing and future physicians prepared to obtain informed consent? The case of genetic testing for susceptibility to breast cancer. Community Genet, 1(4): 203-212. 1998. [PubMed]

Geller G, Doksum T, Bernhardt BA, Metz SA. Participation in Breast Cancer Susceptibility Testing Protocols: Influence of Recruitment Source, Altruism, and Family Involvement on Women's Decisions. Cancer Epidemiol Biomarkers Prev, 8(4): 377-383. 1999. [Pubmed]

Bernhardt BA, Geller G, Doksum T, Metz SA. How effective are nurses and genetic counselors at conducting the informed consent process for breast cancer susceptibility testing?. Oncol Nurs Forum, 27(1): 33-39. 2000.

Tambor ES, Bernhardt BA, Geller GI, Helzlsouer KJ, Doksum T, Holtzman NA. Should women at increased risk for breast and ovarian cancer be randomized to prophylactic surgery?: An ethical and empirical assessment. J Women's Health & Gender-Based Med, 9: 223-233. 2000.

Bernhardt BA, Geller G, Doksum T, Metz SA. Evaluation of nurses and genetic counselors as providers of education about breast cancer susceptibility testing. Oncol Nurs Forum, 27(1): 33-9. 2000. [PubMed]

Tambor ES, Bernhardt BA, Geller G, Helzlsouer KJ, Doksum T, Holtazman NA. Should women at increased risk for breast and ovarian cancer be randomized to prophylactic surgery? An ethical and empirical assessment. J Womens Health Gend Based Med, 9(3): 223-233. 2000. [PubMed]

GELLER, Gail "Minors At-Risk of Future Disease: Their Role in Research"
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Geller G. Commentary: weighing burdens and benefits rather than competence. BMJ, 318(7190): 1065-6. 1999. [PubMed]

Geller G, Tambor ES, Bernhardt BA, Wissow LS, Fraser G. Mothers and daughters from breast cancer families: A qualitative study of their perceptions of the risks and benefits associated with minors' participation in genetic susceptibility research. JAMWA, 55(5): 280-84. 2000. [PubMed]

Geller G, Tambor ES, Bernhardt BA, Wissow LS, Fraser G. Mothers and daughters from breast cancer families: a qualitative study of their perceptions of risks and benefits associated with minor's participation in genetic susceptibility research. J Am Med Womens Assoc, 55(5): 280-4, 293. 2000. [PubMed]

Geller G, Tambor ES, Bernhardt BA, Fraser G, Wissow LG. Informed consent for enrolling minors in genetic susceptibility research: A qualitative study of at-risk children's and parents' views about children's role in decision making. Journal of Adolescent Health, 32: 260-271. 2003.

Broome ME, Kodish R, Geller G, Siminoff L. Children in research: New perspectives and practices for informed consent. IRB, 25(5): S20-25. 2003. [PubMed]

Bernhardt BA, Tambor ES, Fraser G, Wissow LS, Geller G. Parents' and children's attitudes toward the enrollment of minors in genetic susceptibility research: Implications for informed consent. Am J Med Genet A, 116A(4): 315-23. 2003. [PubMed]

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Geller G. The ethics of predictive genetic testing in prevention trials involving adolescents. In Kodish E (ed.) Ethics and Research with Children: A Case-Based Approach. New York, NY: Oxford University Press. 194-222. 2005.

GELLER, Gail "Moral Distress and Suffering of Genetics Professionals"
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Geller G, Micco E, Silver RJ, Kolodner K, Bernhardt BA. The role and impact of personal faith and religion among genetic service providers. Am J Med Genet C Semin Med Genet, 151C(1): 31-40. 2009. [PubMed]

Bernhardt BA, Rushton CH, Carrese J, Pyeritz RE, Kolodner K, Geller G. Distress and burnout among genetic service providers. Genet Med, 11(7): 527-35. 2009. [PubMed]

Bernhardt BA, Silver R, Rushton CH, Micco E, Geller G. What keeps you up at night? Genetics professionals' distressing experiences in patient care. Genet Med, 12(5): 289-97. 2010. [PubMed]

Geller G, Rushton CH, Francomano C, Kolodner K, Bernhardt BA. Genetics professionals' experiences with grief and loss: implications for support and training. Clin Genet, 77(5): 421-9. 2010. [PubMed]

GELLER, Gail "Prenatal Genetic Testing -- Provider-Patient Communication"
Bernhardt BA, Geller G, Doksum T, Larson SM, Roter D, Holtzman NA. Prenatal Genetic Testing: Content of Discussions Between Obstetric Providers and Pregnant Women. Obstet Gynecol, 91(5 Part 1): 648-55. 1998. [PubMed]

Roter DL, Geller G, Bernhardt BA, Larson SM, Doksum T. Effects of obstetrician gender on communication and patient satisfaction. Obstet Gynecol, 93(5 Part 1): 635-41. 1999. [PubMed]

Roter DL, Geller G, Bernhardt BA, Larson SM, Doksum T. Effects of obstetrician gender on communication and patient satisfaction. Obstet Gynecol, 93(5 (Pt 1)): 635-641. 1999. [PubMed]

Bernhardt BA, Mastromariano-Haunstetter C, Roter D, Geller G. How do obstetric providers discuss referrals for prenatal genetic counseling?. J Genet Couns, 14(2): 109-17. 2004. [PubMed]

GELLER, Gail "Publicizing Genetic Discoveries: The Impact of the Media"
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Tambor ES, Bernhardt BA, Rodgers J, Holtzman NA, Geller G. Mapping the human genome: an assessment of media coverage and public reaction. Genet Med, 4(1): 31-36. 2002. [Nature]

Geller G, Bernhardt BA, Holtzman NA. The media and public reaction to genetic research. JAMA, 287(6): 773. 2002. [PubMed]

Geller G, Tambor ES, Bernhardt BA, Rodgers J, Holtzman NA. Houseofficers' reactions to media coverage about the sequencing of the human genome. Soc Sci Med, 56(10): 2211-20. 2003. [Full Text]

Mountcastle-Shah E, Tambor E, Bernhardt BA, Geller G et. al.. Assessing mass media reporting of disease-related genetic discoveries: Development of an instrument and initial fundings. Sci Commun, 24(4): 458-78. 2003.

Mountcastle-Shah E, Tambor E, Bernhardt BA, Geller G, Karaliukas R, Rodgers JE, Holtzman NA. Assessing mass media reporting of disease-related genetic discoveries. Sci Commun, 24(4): 458-478. 2003. [Sage Journals]

Geller G, Bernhardt BA, Gardner M, Rodgers J, Holtzman NA. Scientists' and science writers' experiences reporting genetic discoveries: Toward an ethic of trust in science journalism. Genet Med, 7(3): 198-205. 2005. [PubMed]

Holtzman NA, Bernhardt BA, Mountcastle-Shah E, Rodgers JE, Tambor E, Geller G. The quality of media reports on discoveries related to human genetic diseases. Community Genet, 8(3): 133-44. 2005. [PubMed]

Holtzman NA, Bernhardt BA, Mountcastle-Shah E, Rodgers JE, Tambor E, Geller G. The quality of media reports on discoveries related to human genetic diseases. Community Genet, 8(3): 133-144. 2005. [PubMed]

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GLANZ, Karen "Genetic Testing for Colon Cancer in Multiethnic Hawaii"
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GRABER, Glenn "Societal Impact of Human Genetic Engineering"
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GRAMLING, Robert E. "Population Impact of Raising Perceptions of Heritable Risk"
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GREEN, Michael "Breast Cancer Gene Education--Computer vs Practitioner"
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Eng C, Iglehart D. Decision aids from genetics to treatment of breast cancer: long-term clinical utility or temporary solution?. JAMA, 292(4): 496-8. 2004. [PubMed]

GREEN, Michael "Computer Education for Breast Cancer Genetic Testing"
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Green MJ. Commentary: Computers and Genetic Counseling Time for a Dialogue?. J Genet Couns, 9(4): 359-61. 2000.

Green MJ, Biesecker BB, McInerney AM, Mauger D, Fost N. An Interactive Computer Program Can Effectively Educate Patients About Genetic Testing for Breast Cancer Susceptibility. Am J Med Genet A, 103(1): 16-23. 2001. [PubMed]

Green MJ, McInerney AM, Biesecker BB, Fost N. Education About Genetic Testing for Breast Cancer Susceptibility: Patient Preferences for a Computer Program or Genetic Counselor. Am J Med Genet A, 103(1): 24-31. 2001. [PubMed]

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GREEN, Robert "Genetic Risk Assessment and Counseling for Alzheimer's Disease"
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Cupples LA, Farrer LA, Sadovnick AD et. al.. Estimating risk curves for first-degree relatives of patients with Alzheimer's disease: The REVEAL study. Genet Med, 6(4): 192-96. 2004. [PubMed]

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LaRusse S, Roberts JS, Marteau TM et. al.. Genetic susceptibility testing versus family history-based risk assessment: Impact on perceived risk of Alzheimer disease. Genet Med, 7(1): 48-53. 2005. [PubMed]

GREEN, Robert "Risk Evaluation and Education for Alzheimer's Disease"
Post SG. Full-spectrum proxy consent for research participation when persons with Alzheimer disease lose decisional capacities: research ethics and the common good. Alzheimer Dis Assoc Disord, 17(Suppl 1): S3-11. 2003. [PubMed]

Yip AG, McKee AC, Green RC, Wells J, Young H, Cupples LA, Farrer LA. APOE, vascular pathology, and the AD brain. Neurology, 65(2): 259-65. 2005. [PubMed]

Chao S, Roberts J, Marteau T, Silliman R, Cupples L, Green R. Health Behavior Changes After Genetic Risk Assessment for Alzheimer Disease: The REVEAL Study. Alzheimer Dis Assoc Disord, 22(1): 94-97. 2008. [PubMed]

Christensen KD, Roberts JS, Royal CD, Fasaye GA, Obisesan T, Cupples LA, Whitehouse PJ, Butson MB, Linnenbringer E, Relkin NR, Farrer L, Cook-Deegan R, Green RC. Incorporating ethnicity into genetic risk assessment for Alzheimer disease: the REVEAL study experience. Genet Med, 10(3): 207-14. 2008. [PubMed]

Szekely CA, Green RC, Breitner JCS, Østbye T, Beiser AS, Corrada MM, Dodge HH, Ganguli M, Kawas CH, Kuller LH, Psaty BM, Resnick SM, Wolf PA, Zonderman AB, Welsh-Bohmer KA, Zandi PP. No advantage of "Aß42-lowering" NSAIDs for prevention of AD in six pooled cohort studies. Neurology, 70(24): 2291-2298. 2008. [PubMed]

Cassidy MR, Roberts JS, Bird TD, Steinbart EJ, Cupples LA, Chen CA, Linnenbringer E, Green RC. Comparing test-specific distress of susceptibility versus deterministic genetic testing for Alzheimer's disease. Alzheimers Dement, 4(6): 406-13. 2008. [PubMed]

Gavett BE, Poon SJ, Ozonoff A, Jefferson AL, Nair AK, Green RC, Stern RA. Diagnostic utility of the NAB List Learning test in Alzheimer's disease and amnestic mild cognitive impairment. J Int Neuropsychol Soc, 15(1): 121-9. 2009. [PubMed]

Horsdal HT, Olesen AV< Gasse C, Sørensen HT, Green RC, Johnsen SP. Use of statins and risk of hospitalization with dementia: a Danish population-based case-control study. Alzheimer Dis Assoc Disord, 23(1): 18-22. 2009. [PubMed]

Green RC, Schneider LS, Amato DA, Beelen AP, Wilcock G, Swabb EA, Zavitz KH; Tarenflurbil Phase 3 Study Group. Effect of tarenflurbil on cognitive decline and activities of daily living in patients with mild Alzheimer disease: a randomized controlled trial. JAMA, 302(23): 2557-64. 2009. [PubMed]

Gavett BE, Ozonoff A, Doktor V, Palmisano J, Nair AK, Green RC, Jefferson AL, Stern RA. Predicting cognitive decline and conversion to Alzheimer's disease in older adults using the NAB List Learning test. J Int Neuropsychol Soc, 16(4): 651-60. 2010. [PubMed]

Roberts JS, Karlawish JH, Uhlmann WR, Petersen RC, Green RC. Mild cognitive impairment in clinical care. Neurology, 75(5): 425-431. 2010. [PubMed Central]

Jun G et al. Meta-analysis confirms CR1, CLU, and PICALM as Alzheimer's disease risk loci and reveals interactions with APOE genotypes. Arch Neurol, 67(12): 1473-1484. 2010. [PubMed Central]

Naj AC et al. Common variants in MS4A4/MS4A6E, CD2uAP, CD33, and EPHA1 are associated with late-onset Alzheimer's disease. Nat Genet, 43(5): 436-441. 2011. [PubMed Central]

Ready RE, Carvalho JO, Green RC, Gavett BE, Stern RA. The structure and validity of self-reported affect in mild cognitive impairment and mild Alzheimer's disease. Int Psychogeriatr, 23(6): 887-898. 2011. [PubMed]

Roberts JS, Christensen KD, Green RC. Using Alzheimer's disease as a model for genetic risk disclosure: implications for personal genomics. Clin Genet, 80(5): 407-414. 2011. [PubMed Central]

Mielke MM, Leoutsakos J-M, Tschanz JT, Green RC, Tripodis Y, Corcoran CD, Norton MC, Lyketsos CG. Interaction between vascular factors and the APOE E4 allele in predicting rate of progression in Alzheimer's dementia. J Alzheimers Dis, 26(1): 127-134. 2011. [PubMed Central]

Logue MW, Schu M, Vardarajan BN, Buros J, Green RC, Go RCP, Griffith P, Obisesan TO, Shatz R, Borenstein A, Cupples LA, Lunetta KL, Fallin MD, Baldwin CT, Farrer LA. A comprehensive genetic association study of Alzheimer disease in African Americans. Arch Neurol, 68(12): 1569-1579. 2011. [PubMed Central]

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Lehmann LS, Kaufman DJ, Sharp RR, Moreno TA, Mountain JL, Roberts JS, Green RC. Navigating a research partnership between academia and industry to assess the impact of personalized genetic testing. Genet Med, 14(2): 268-273. 2012. [PubMed]

Cassa CA, Savage SK, Taylor PL, Green RC, McGuire AL, Mandl KD. Disclosing pathogenic genetic variants to research participants: quantifying an emerging ethical responsibility. Genome Res, 22(3): 421-8. 2012. [PubMed]

Harris ED, Ziniel SI, Amatruda JG, Clinton CM, Savage SK, Taylor PL, Huntington NL, Green RC, Holm IA. The beliefs, motivations, and expectations of parents who have enrolled their children in a genetic biorepository. Genet Med, 14(3): 330-337. 2012. [PubMed]

Green RC, Berg JS, Berry GT, Biesecker LG, Dimmock DP, Evans JP, Grody WW, Hegde MR, Kalia S, Korf BR, Krantz I, McGuire AL, Miller DT, Murray MF, Nussbaum RL, Plon SE, Rehm HL, Jacob HJ. Exploring concordance and discordance for return of incidental findings from clinical sequencing. Genet Med, 14(4): 405-10. 2012. [PubMed]

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GREEN, Robert "Impact of Direct to Consumer Genetic Testing"
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Health-care referrals from direct-to-consumer genetic testing. Genetic Testing and Molecular Biomarkers. Giovanni MA, Fickie MR, Lehmann LS, Green RC, Meckley LM, Veenstra D, Murray MF, 14(6): 817-9. 2010. [PubMed]

Milke MM, Leoutsakos J-M, Tschanz JT, Green RC, Tripodis Y, Corcoran CD, Norton MC, Lyketsos CG. Interaction between vascular factors and the APOE E4 allele in predicting rate of progression in Alzheimer's dementia. J Alzheimers Dis, 26(1): 127-134. 2011. [PubMed Central]

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Kopits IM, Chen C, Roberts JS, Uhlmann W, Green RC. Willingness to pay for genetic testing for Alzheimer's disease: a measure of personal utility. Genet Test Mol Biomarkers, 15(12): 871-875. 2011. [PubMed Central]

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

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HUNT, Linda "Clinicians' Concepts of Racial/Ethnic Differences in the Management of Chronic Illness"
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Hunt LM, Kreiner MJ. Pharmacogenetics in primary care: the promise of personalized medicine and the reality of racial profiling. Cult Med Psychiatry, 37(1): 226-235. 2013. [PubMed]

Hunt LM, Truesdell ND, Kreiner MJ. Genes, race, and culture in clinical care: racial profiling in the management of chronic illness. Med Anthropol Q, 27(2): 253-271. 2013. [PubMed]

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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.

Science and Social Responsibility in the New Millennium: Conference Report. Washington, DC: Student Pugwash USA, June 2000.

Nash, Audrey et. al (editors). "Science and Social Responsibility in the New Millennium Conference Proceedings." Washington, DC: Student Pugwash USA. Summer 2000.

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.

A. Nash et al.. Science and Social Responsibility in the New Millenium. La Jolla, CA: Student Pugwash USA.. .

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

JAYARATNE, Toby "Beliefs among Whites and African-Americans about Genetic Causes for Gender, Class and Race Differences: Social-Political Educational Implications"
Lanie AD, Jayaratne TE, Sheldon JP et al. Exploring the public understanding of basic genetic concepts. J Genet Couns, 13(4): 305-320. 2004.

Lanie AD, Javaratne TE, Sheldon JP, Kardia SL, Anderson ES, Feldbaum M, Petty EM. Exploring the public understanding of basic genetic conecpts. J Genet Couns, 13(4): 305-320. 2004. [PubMed]

Jayaratne TE, Ybarra O, Sheldon JP, Brown TN, Feldbaum M, Pfeffer CA, Petty EM. White Americans' Genetic Lay Theories of Race Differences and Sexual Orientation: Their Relationship with Prejudice toward Blacks, and Gay Men and Lesbians. Group Process Intergroup Relat, 9(1): 77-94. 2006. [PubMed]

Jayaratne TE, Ybarra O, Sheldon JP, Brown TN, Feldbaum M, Pfeffer CA, Petty EM. White Americans' genetic lay theories of race differences and sexual orientation: their relationship with prejudice toward blacks, and gay men and lesbians. Gr Process Intergr Relations, 9(1): 77-94. 2006. [Sage Journals]

Sheldon JP, Pfeffer CA, Jayaratne TE, Feldbaum M, Petty EM. Beliefs about the etiology of homosexuality and about the ramifications of discovering its possible genetic origin. J Homosex, 52(3-4): 111-150. 2007. [Taylor & Francis Online]

Sheldon JP, Jayartne TE, Feldbaum MB, DiNardo CD, Petty EM. Applications and implications of advances in human genetics: perspectives from a group of black Americans. Community Genet, 10(2): 82-92. 2007. [PubMed]

Sheldon JP, Jayaratne TE, Feldbaum MB, DiNardo CD, Petty EM. Applications and Implications of Advances in Human Genetics: Perspectives from a Group of Black Americans. Community Genet, 10(2): 82-92. 2007. [PubMed]

Cole ER, Jayaratne TE, Cecchi LA, Feldbaum MB, Petty EM. Vive La Difference? Genetic Explanations for Perceived Gender Differences in Nurturance. Sex Roles, 57(3-4): 211-22. 2007. [Full Text]

Jayaratne TE, Gelman SA, Feldbaum M, Sheldon JP, Petty EM, Kardia SL. The perennial debate: nature, nurture, or choice? Black and white Americans' explanations for individual differences. Rev Gen Psychol, 13(1): 24-33. 2009. [PubMed]

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

Christensen KD, Jayaratne TE, Roberts JS, Kardia SL, Petty EM. Understandings of basic genetics in the United States: results from a national survey of black and white men and women.. Public Health Genomics, 13(7-8): 467-76. 2010. [PubMed]

Suhay E, Jayaratne TE. Does biology justify ideology? The politics of genetic attribution. Public Opin Q, 77(2): 497-521. 2013. [Oxford Journals]

JONSEN, Albert "A Paradigm Approach to Ethical Problems in Genetics"
Durfy SJ. Ethics and the Human Genome Project. Arch Pathol Lab Med, 117(5): 466-469. 1993.

Jonsen AR. Genetic Testing, Individual Rights, and the Common Good. In Campbell C, Lustig A (eds.) Duties to Others. Boston: Kluwer Academic. 319p. 1994.

Callahan TC, Durfy SJ, Jonsen AR. Ethical Reasoning in Clinical Genetics: A Survey of Cases and Methods. Journal of Clinical Ethics, 6(3): 248-253. 1995.

Jonsen AR. 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. Bloomington: Indiana University Press. 248p. 1996.

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

Whitehouse PJ, Juengst ET, Murray TH, Mehlman MJ. Enhancing Cognition in the Intellectually Intact. Hastings Cent Rep, 27(3): 14-22. 1997. [PubMed]

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

Juengst ET, Walters L. 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.. 1999.

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

Juengst ET. 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. Uppsala: Uppsala University Library. 125-152. 1999.

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

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

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

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

Mehlman MJ. Genetic Enhancement and the Regulation of Acquired Genetic Advantages. In Murray T, Mehlman M (eds.) The Encyclopedia of Ethical, Legal and Political Issues in Biotechnology. New York, NY: John Wylie & Sons.. 2000.

Juengst ET, Parens E. 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. Baltimore, Md.: Johns Hopkins University Press. 20-36. 2003.

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

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

Juengst ET. FACE facts: Why human genetics will always provoke bioethics. J Law Med Ethics, 32(2): 267-75, 191. 2004. [PubMed]

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

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

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

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

Hoffman S. "Racially-tailored" medicine unraveled. Am Univ Law Rev, 55(2): 395-452. 2005. [PubMed]

Macklin R, Juengst E. Genetic and reproductive technologies. In Borchert D (ed..) The Encyclopedia of Philosophy, 2nd Edition. Farmington Hills, MI: Macmillan Reference USA.. 2006.

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

Juengst E. 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?. Cambridge: Cambridge University Press. pp 149-58. 2006.

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

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

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

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

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

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

Marshall, Patricia A.. Ethical Issues in Research Design and Informed Consent to Biomedical and Social Research in Resource-Poor Settings. Special Programme for Research and Training in Tropical Diseases (TDR). Geneva, Switzerland: World Health Organization (WHO). 1-88. 2007.

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

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

Winkelman C, Higgins PA, Chen Y-J K, Levin A. Cytokines in chronically critically ill patients after activity and rest. Biol Res Nurs, 8(4): 261-71. 2007. [PubMed]

Natowicz M, Kass N et al. Access to Health Insurance: Experiences and Attitudes of those with Genetic versus Non-genetic Medical conditions. Am J Med Genet, 143A(7): 707-717. 2007. [PubMed]

Leppert M, Matsuda I et al. Community Engagement, Public Consultation, and Informed Consent in the International HapMap Project. Community Genet, 10(3): 186-198. 2007. [PubMed]

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

Rotimi C, Leppert M, Matsuda I, Zeng C, Zhang H, Adebamowo C, Ajayi I, Aniagwu T, Dixon M, Fukushima Y, Macer D, Marshall P, Nkwodimmah C, Peiffer A, Royal C, Suda E, Zhao H, Wang VO, McEwen J; International HapMap Consortium. Community engagement and informed consent in the International HapMap project. Community Genet, 10(3): 186-98. 2007. [PubMed]

Juengst E. Annotating the moral map of enhancement: gene doping, the limits of medicine and the spirit of sport. In Murray T (ed..) Ethics, Genetics and the Future of Sport: Implications of Genetic Modification Selection. Washington, DC: Georgetown University Press. 175-204. 2009.

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

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

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

Workman ML, Winkelman C. (accepted for publication, anticipated out in August). The Genetics of Pulmonary Disease. Critical Care Nursing Clinics of North America.. Crit Care Nurs Clin North Am, 20(2): 171-189. 2008. [PubMed]

Hinstock RH, Fishman JR. Social dimensions of anti-aging science and medicine. In Dannefer D, Phillipson C (eds.) The SAGE Handbook of Social Gerontology. Thousand Oaks, CA: Sage Publications, Inc.. 472-482. 2010.

Fishman JR, Binstock RH, Lambrix MA. Anti-aging science: the emergence, maintenance, and enhancement of a discipline. J Aging Stud, 22(4): 295-303. 2008. [Science Direct]

Berg JW. Of elephants and embryos: a proposed framework for legal personhood. Hast Law J, 59: 369-406. 200. [Selected Works]

Juengst E, Goldenberg A. Genetic diagnostic, pedigree and screening research. In Emanuel E, Grady C, Reidar L, Miller F, Wendler D (eds. et al.) The Oxford Textbook on the Ethics of Clinical Research. New York, NY: Oxford University Press. 298-314. 2008.

Settersten RA Jr, Flatt M, Ponsaran R. From the lab to the front line: how individual biogerontologists navigate their contested field. J Aging Stud, 22(4): 304-312. 2008. [PubMed]

Liu TI, Wise PH, Butte AJ. The "etiome": identification and clustering of human disease etiological factors. BMC Bioinformatics, 10(Suppl 2): S14. 2009. [PubMed Central]

JUENGST, Eric "Enhancement Ethics and the Molecular Genetics of Aging"
Juengst ET, Binstock RH, Mehlman MJ et al. Aging- Antiaging research and the need for public dialogue. Science, 299(5611): 1323-1323. 2003. [PubMed]

Juengst ET, Binstock RH, Mehlman M et al. Biogerontology, 'anti-aging medicine,' and the challenges of human enhancement. Hastings Cent Rep, 33(4): 21-30. 2003. [PubMed]

Mehlman MJ, Binstock RH, Juengst ET et al. Anti-aging medicine: Can consumers be better protected?. Gerentologist, 44(3): 304-310. 2004. [PubMed]

Whitehouse PJ, Juengst ET. Antiaging medicine and mild cognitive impairment: Practice and policy issues for geriatrics. J. Am. Geriatr. Soc., 53(8): 1417-1422. 2005. [PubMed]

Binstock R, Fishman J, Juengst E. 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.. 2006.

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

Allyse M, Karkazis K, Lee S et al. Informational risk, institutional review, and autonomy in the proposed changes to the common rule. IRB, 34(3): 17-9. 2012. [PubMed]

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

JUENGST, Eric "Anticipating Personal Genomic Medicine: Impact and Implications"
Dressler LG. Control and use of banked human specimens in research. Biospecimen ownership. Counterpoint. Journal of Cancer Epidemiology, Prevention and Biomarkers, 16(2): 190-91. 2007. [PubMed]

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KAHN, Jeffrey "Genetics & Disability Insurance Ethics, Law & Policy"
Wolf SM, Kahn JP, Working Group on Genetic Testing in Disability Insurance. Genetic testing and the future of disability insurance. J Law Med Ethics, 35(2 Suppl): 6-32. 2007. [PubMed]

KAHN, Jonathan "Colliding Categories: Haplotypes, Race & Ethnicity"
Kahn J. Genes, Race, and Population: Avoiding a Collision of Categories. Am J Public Health, 96(11): 1965-70. 2006. [PubMed]

KARJALA, Dennis "A Legal Research Agenda for the Human Genome Initiative"
Karjala DS. A Legal Research Agenda for the Human Genome Initiative. Jurimetrics, 32(2): 121-311. 1992. [PubMed]

KAY, Lily "Information and the Transformation of Molecular Biology"

KELEHER, Cynthia "Human Genome Project Education and Outreach"
Keleher C. Translating the Genetic Library: The Goals, Methods, and Applications of the Human Genome Project. Bull Med Libr Assoc, 81(3): 274-277. 1993. [PubMed]

KELLY, Susan "Routes of Access to Genetic Services For Rural KY Women"
Kelly SE. The new genetics meets the old underclass: Findings from a study of genetic outreach services in rural Kentucky. Crit Public Health, 12(2): 1-18. 2002.

Kelly SE. "New" genetics meets the old underclass: findings from a study of genetic outreach services in rural Kentucky. Crit Public Health, 12(2): 169-186. 2002. [Taylor & Francis Online]

Kelly SE. Bioethics and rural health: theorizing place, space, and subjects. Soc Sci Med, 56(11): 2277-2288. 2003. [PubMed]

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

KEVLES, Daniel "Seminar on Ethical and Policy Issues Arising from the Project to Map and Sequence the Human Genome"


Kevles DJ. Social and Ethical Issues in the Human Genome Project. Phi Kappa Phi Journal, 73: 18-21. 1993.

KILBERG, Richard "Our Genes/Our Choices"
Gesteland RF. Exploring genetic technology. Judicature, 86(6): 320-321. 2003. [View Review]

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

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

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

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. Uncertainty in a family at high risk for a BRCA1 mutation. J Genet Couns, 11: 470-471. 2002.

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

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

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

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

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

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

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

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

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

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

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

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

Klitzman R. 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. 2008. [PubMed]

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

Klitzman R, Sauer MV. Payment of egg donors in stem cell research in the USA. Reprod Biomed Online, 18(5): 603-608. 2009. [PMC]

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

Fisher CF, Chin L, Klitzman R. Defining neuromarketing: practices and professional challenges. Harv Rev Psychiatry, 18(4): 230-237. 2010. [PMC]

Klitzman R. Views of discrimination among individuals confronting genetic disease. J Genet Couns, 19(1): 68-83. 2010. [PMC]

Klitzman RL, Kleinert K, Rifai-Bashjawish H, Leu CS. The reporting of IRB review in journal articles presenting HIV research conducted in the developing world. Dev World Bioeth, 11(3): 161-169. 2011. [PMC]

Klitzman RL. How IRBs view and make decisions about social risks. J Empir Res Hum Res Ethics, 8(3): 58-65. 2013. [PubMed Central]

Klitzman R. How US institutional review boards decide when researchers need to translate studies. J Med Ethics, 40(3): 193-197. 2014. [PMC]

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

Klitzman R, Kirshenbaum SB, Kittel L, Morin SF, Daya S, Mastrogiacomo M, Rotheram-Borus MJ. 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. 2004. [Full Text]


KNOPPERS, Bartha "The First International Conference on DNA Sampling & Human Genetic Research: Ethical, Legal and Policy Aspects"

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

Kupperman M, Feeny D, Gates E, Posner SF, Blumberg B, Washington AE. Preferences of women facing a prenatal diagnostic choice: long-term outcomes matter most. Prenat Diagn, 19(8): 711-716. 1999. [PubMed]

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



Kuppermann M, Shiboski S, Feeny D, Elkin E, Washington AE. 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. 1997.

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

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

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

Moyer A, Brown BA, Gates E, Daniels M, Brown HD, Kuppermann M. 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. 1999. [PubMed]

Kuppermann M, Feeny D, Gates E, Posner S, Blumberg B, Washington AE. Preferences of women facing a prenatal diagnostic choice: long-term outcomes matter most. Prenat Diagn, 19(8): 711-716. 1999. [PubMed]

Ostrove JM, Adler NE, Kuppermann M, Washington AE. 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. 2000.

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

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

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

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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. Genetic Discrimination: Perspectives of Consumers. Science, 274: 621-624. 1996.

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. The Gap Between Practice and Genetics Education of Health Professionals: HuGEM Survey Results. Genet Med, 2(4): 1-6. 2000.

LEA, Dale "A Practice-Based Genetics Curriculum for Nurse Educators"

LEE, Sandra "Distributive Justice in Human Genetic Variation Research"
Lee SS, Mountain J, Koenig BA. The meanings of "race" in the new genomics: implications for health disparities research. In Henderson GE, Estroff SE, Churchill LR, King NMP, Oberlander J, Strauss RP (eds..) The Social Medicine Reader, Second Edition, Vol. Two: Social and Cultural Contributions to Health, Difference, and Inequality. Durham, NC: Duke University Press. 218-251. 2005.

Lee SS, Koenig BA. 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. Leiden: Martinus Nijhoff Publishers. 231-244. 2003.

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

SPICER, Paul "Indigenous Communities and Human Microbiome Research"
Human Microbiome Project Consortium. Structure, function and diversity of the healthy human microbiome. Nature, 486(7402): 207-214. 2012. [PubMed Central]

STOWE, Matthew "A Framework for Disability Perspectives on HGP"
Stowe MJ, Turnbull HR, Pence R, Rack J, Schrandt S, Laub L. 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. 2007.

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

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TABOR, Holly K. "Ethical and Social Issues in the Study of Genetics of Complex Traits"
Yu JH, Jamal SM, Tabor HK, Barnshard MJ. Self-guided management of exome and whole-genome sequencing results: changing the results return model. Genet Med, 15(9): 684-690. 2013. [PubMed]

McMillin MJ et al. Mutations in PIEZO2 cause Gordon syndrome, Marden-Walker syndrome, and distal arthrogryposis type 5. Am J Hum Genet, 94(5): 734-744. 2014. [PubMed]

TABOR, Holly K. "Innovative Approaches to Returning Results in Exome and Genome Sequencing Studies"
Yu JH, Marrell TM, Jamal SM, Tabor HK, Bamshad MJ. Attitudes of genetics professionals toward the return of incidental results from exome and whole-genome sequencing. Am J Hum Genet, 95(1): 77-84. 2014. [PubMed]

Henderson GE, Wolf SM, Kuczynski KJ, Joffe S, Sharp RR, Parsons DW, Knoppers BM, Yu JH, Appelbaum PS. The challenge of informed consent and return of results in translational genomics: empirical analysis and recommendations. J Law Med Ethics, 42(3): 344-355. 2014. [PubMed]

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.




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

Peshkin BN, DeMarco TA, Garber JE et al. 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. 2008. [PubMed]

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

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

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

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


TOMLINSON, Tom "Ethics and Public Attitudes Concerning the Use of Archived Biological Samples"
Tomlinson T, Kaplowitz SA, Faulkner M. Do people care what's done with their biobanked samples?. IRB, 36(4): 8-15. 2014. [PubMed]

TROTTIER, Ralph "Impact of HGP Derived Technology on Genetic Testing, Screening and Counseling: Cultural, Ethical, and Legal Issues"
Crandall LA. 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.. 1992.

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. Frederick, Maryland: University Publishing Group. pp. 123-34. .

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

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

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

Trottier RW. 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.. 1996.

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.

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

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

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

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

WAISBREN, Susan "Expanded Newborn Screening for Metabolic Disorders"
Albers S, Levy HL. One more thought on sudden infant death syndrome. Pediatrics, 107(4): 809. 2001. [PubMed]

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

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

Waisbren SE, Albers S, Amato S et al. Effect of Expanded Newborn Screening for Biochemical Genetic Disorders on Child Outcomes and Parental Stress. JAMA, 290(19): 2564-2572. 2003. [PubMed]

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 SE, Levy HL. Expanded screening of newborns for genetic disorders. JAMA, 291(7): 820-821. 2004. [PubMed]

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

Gurian EA, Kinnamon DD, Henry JJ, Waisbren SE. Expanded newborn screening for biochemical disorders: The effect of a false-positive result. Pediatrics, 117(6): 1915-21. 2006. [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. he licensing of DNA patents by US academic institutions: an empirical survey. Nat Biotechnol, 24(1): 31-39. 2006. [PubMed]

WALTERS, LeRoy "National Information Resource on Ethics and Human Genetics"
. 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. Washington, D.C.: U.S. Government Printing Office. 126p. 1982.

. 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. Washington, D.C: U.S. Government Printing Office. 122p. 1983.

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

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

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



Walters L, Kahn TJ. Bibliography of Bioethics, Volume 22. Washington, DC: Kennedy Institute of Ethics, Georgetown University. 761. .

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



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



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



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



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

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





Poland SC, Bishop LJ. Bioethics and cloning, part 1. Kennedy Inst Ethics J, 12(3): 305-324. 2002. [Project Muse]

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



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

Bishop LJ, Nolen AL. Animals in science and education. Ref Libr, 41(86): 87-70. 2004. [Taylor & Francis Online]



"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. Research into Genetics and Crime: Consensus and Controversy. Politics Life Sci, 15(1): 107-109. 1996.

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


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

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

Wertz DC. Provider Biases and Choices: The Role of Gender. Clin Obstet Gynecol, 36(3): 521-531. 1993.

Wertz DC, Fletcher JC. Feminist Criticism of Prenatal Diagnosis: A Response. Clin Obstet Gynecol, 36(3): 541-567. 1993. [PubMed]

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Wertz DC. 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. 1997.

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

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

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

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

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

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

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

Wertz DC. 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.. 1998.

Wertz DC. 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.. 1999.

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. New Jersey: Prentice Hall. 145-165. .

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. Emerging Risks of Genetic Testing. Risk Management Foundation of the Harvard Medical Institutions Forum. 2000.

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

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

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

WIKLER, Daniel "Human Genome Research in an Interdependent World"
Capron A. Human Genome Research in an Interdependent World. Kennedy Inst Ethics J, 1(3): 247-51. 1991. [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. Symposium: Incidental Findings in Human Subjects Research: From Imaging to Genomics. J Law Med Ethics, 36(2): 209-435. 2008.

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. Managing Incidental Findings in Human Subjects Research: Analysis and Recommendations. J Law Med Ethics, 36(2): 219-248. 2008. [PubMed]

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Fabsitz RR, McGuire A, Sharp Richard R et al. 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. 2010. [PubMed]

WOLF, Susan "Managing Incidental Findings and Research Results in Genomic Biobanks and Archive"
Holm IA, Taylor PL. The informed cohort oversight board: from values to architecture. Minn J Law Sci Technol, 13(2): 669-690. 2012. [PubMed Central]

. Clinical Genome Sequencing. In Ginsburg G, Willard H (eds.) Genomic and Personalized Medicine, Vol. 1. Waltham, MA: Academic Press. 102-22. 2013.

Krier JB, Green RC. Management of incidental findings in clinical genomic sequencing. Curr Protoc Hum Genet, Unit 9.23(Suppl 77): 1-13. 2013. [PubMed Central]

McGuire AL, Joffe S, Koenig BA, Biesecker BB, McCullough LB, Blumenthal-Barby JS, Caulfield T, Terry SF, Green RC. Point-counterpoint. Ethics and genomic incidental findings. Science, 340(6136): 1047-1048. 2013. [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: November 26, 2014