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Since its creation in 1990, the Ethical, Legal and Social Implications (ELSI) Research Program has funded hundreds of research projects, conferences, and other activities-through grants and contracts. This has resulted in many peer reviewed journal articles, books, newsletters, websites, television and radio programs and educational materials. Many of these products are included in this database (updates are still in progress). However, there are likely to be a number of publications missing, particularly those affiliated with older grants.

Overview

The ELSI Publications and Products Database organizes the publications for all ELSI projects and activities by the last name of the principle investigator (PI). Each entry also includes, and can be searched by:

  • A specific topic - or search term - related to an ELSI issue, (i.e., discrimination, genetic testing or privacy)
  • The name of the author
  • The name of the journal
  • The type of grant (i.e., education, research or conference).
  • The grant number.
  • The name of the principal investigator.

Note: To see ALL publications, click on the Search button below without typing anything into the search fields. (Please be aware that publications with multiple authors may be associated with more than one project and will appear on the comprehensive list for each relevant project.)

Missing publication? Many of these products are included in this database (updates are still in progress). However, there are likely to be a number of publications missing, particularly those affiliated with older grants. If you know of an ELSI funded product that is not currently listed in this database, please submit a request to add it.


Topical Bibliographic Resource on DNA Identification

An annotated listing of  publications and other products from research supported by the ELSI program on issues related to using DNA for identification purposes in a wide range of settings.

  • Overview

    The ELSI Publications and Products Database organizes the publications for all ELSI projects and activities by the last name of the principle investigator (PI). Each entry also includes, and can be searched by:

    • A specific topic - or search term - related to an ELSI issue, (i.e., discrimination, genetic testing or privacy)
    • The name of the author
    • The name of the journal
    • The type of grant (i.e., education, research or conference).
    • The grant number.
    • The name of the principal investigator.

    Note: To see ALL publications, click on the Search button below without typing anything into the search fields. (Please be aware that publications with multiple authors may be associated with more than one project and will appear on the comprehensive list for each relevant project.)

    Missing publication? Many of these products are included in this database (updates are still in progress). However, there are likely to be a number of publications missing, particularly those affiliated with older grants. If you know of an ELSI funded product that is not currently listed in this database, please submit a request to add it.


    Topical Bibliographic Resource on DNA Identification

    An annotated listing of  publications and other products from research supported by the ELSI program on issues related to using DNA for identification purposes in a wide range of settings.

Search

BROWNER, Carole - Use of Amniocentesis by Mexicans and Mexican-Americans [R01 HG001384]

This project will examine decisions about the use of prenatal diagnostic testing made by Mexican immigrant and Mexican-American families found to be at risk for having a child with a disability. The specific aims are: to identify the considerations Mexican immigrant families take into account when deciding whether to undergo amniocentesis after having been told they are at increased risk of having a child with a disability based on maternal serum alpha-fetoprotein (MSAFP) prenatal screening; to understand the role genetic counseling plays in shaping Mexican immigrant and Mexican-American families' understandings about prenatal diagnostic testing, their decisions about its use, and their experiences with the tests; to assess the influence of genetic counseling and the decision to accept or decline amniocentesis on Mexican immigrant and Mexican-American families' subsequent experiences of that pregnancy and any succeeding pregnancies during the following four years; and to investigate how Mexican immigrant and Mexican-American families reach consensus about whether the woman should undergo amniocentesis and how differences are resolved when they occur.

Browner CH. "Situating Women's Reproductive Activities." American Anthropologist. 2000; 102(4):773-88.

Journal Article

Browner, C.H. and Preloran, H.M. "Latinas, Amniocentesis and the Discourse of Choice." Culture, Medicine, and Psychiatry. 2000; 24(3): 353-75.

[PubMed]
Journal Article

Browner, C.H. and Preloran, H.M. "Interpreting Low-Income Latinas' Amniocentesis Refusals." Hispanic Journal of Behavioral Sciences 2000; 22(3): 346-68.

Journal Article

Markens S, Browner CH, Preloran HM. "Im Not the One Theyre Sticking the Needle Into: Latino Couples, Fetal Diagnosis, and the Discourse of Reproductive Rights." Gender & Society. 2003; 17(3):462-81.

[Full Text]
Journal Article

Browner CH and Preloran HM. "Expectations, Emotions, and Medical Decision Making: A Case Study on the Use of Amniocentesis." Transcultural Psychiatry. 2004; 41(4): 427-444.

[PubMed]
Journal Article

Browner CH, Preloran HM, and Balzano S. (Accepted for publication.) "Identity Management in an At-Risk Medical Situation." In, Mary Lawler and Cheryl Mattingly, eds. The Engaged Self.

Book Chapter

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

Journal Article

BUCHANAN, Allen - The Human Genome Initiative and Limits of Ethical Theory [R01 HG001023]

This project will investigate many general and far-reaching moral issues raised by the Human Genome Initiative, from distributive and intergenerational justice to concepts of personal identity, eugenics, and the implications of moral theories for policy development in genetics. The research will build upon sources in contemporary ethical work on the moral status of future generations, distributive justice including Rawls, equality of opportunity, and personal identity. The specific objectives of the research include examination of the implications of the possibilities for genetic intervention for equality of opportunity, investigation of the implications of anticipated advances in genetic knowledge and genetic intervention for conceptions of the nature of the self, comparison between modern genetic research and eugenics, and determination of the extent to which ethical theorizing can provide guidance for private individuals and public policy makers. Aided by outstanding scientists, the investigators will attempt to remedy the failure of contemporary ethical literature to engage with concrete problems of individual decision making or public policy. The methodology of this project is that of a historically contextualized, rigorous conceptual and normative analysis of the moral foundations of the pursuit of genetic knowledge and of capacities for genetic intervention.

Buchanan, A.E., D.W. Brock, N. Daniels, and D. Wickler. From Chance to Choice: Genetics & Justice. Cambridge, UK: Cambridge University Press, 2000. 398p.

Book

BULGER, Ruth - Predicting Future Disease: Issues in the Development, Application, and Use of Tests for Genetic Disorders [N01 HG002138]

The Institute of Medicine (IOM) through its Board on Health Sciences Policy established a panel of experts to evaluate issues in the development, application, and use of tests for genetic disorders. This two-year study is addressing a variety of issues presented by the rapid proliferation of genetic tests capable of predicting future disease in otherwise healthy individuals. It is also attempting to develop responsible approaches to resolving current and future problems presented by the rapid application of genetic tests. The study is focusing on the following areas: the availability of adequately trained personnel to administer and interpret tests; quality control and integrity in testing and approval for wide scale use of tests for single gene disorders; cost effectiveness of testing; access to test results, specifically by insurers; and the ethical dilemmas related to the issues of autonomy and privacy. One workshop on laboratory issues in human genetics was held in February 1992, and several additional workshops are planned for the remainder of 1992, with a public hearing scheduled for September 1992. Proceedings of these workshops and of the public hearing will be printed and disseminated. In addition, a comprehensive report including findings and recommendations will be delivered at the end of the study.

Fletcher, J. C. (1995). "Assessing genetic risks. Implications for health and social policy, Lori B. Andrews, Jane E. Fullarton, Neil A. Holtzman, and Arno G. Motulsky, eds., Washington, DC: National Academy Press, 1994, 307 pages, $44.95."  12(4): 433-438. [Cambridge]

Book

BURHANSSTIPANOV, Linda - Genetic Education for Native Americans [R25 HG001866]

This 3 year project intends to modify existing genetics education curricula to create culturally competent education interventions (i.e., independent modules and a 20-hour comprehensive intervention) which will be targeted to the Native American college and university students, and to educators who teach Native Americans. The specific aims are to (1) develop, pretest, refine, promote, implement, and evaluate the effectiveness of culturally competent genetic education interventions (e.g., individual modules and comprehensive workshop) for Native American college and university students, and educators; (2) pretest and modify culturally relevant genetic educational information and resources, including, pre- and post-tests for the educational interventions; (3) compare the effectiveness (knowledge and attitudes) of the individual education modules implemented independently with the same module implemented as part of the 20-hour comprehensive education workshop; and, (4) initiate the development of a national database of scientists willing to provide genetic research mentor ship opportunities, and Native American students (college and graduate students) who are interested in genetic education, research and care. The overall goal of this application is to develop culturally acceptable materials providing Native American students with information so that they can make informed decisions about genetic issues and pursuing genetic science careers, including genetic counseling and research. The interventions will be implemented in geographically diverse settings throughout the U.S., primarily in conjunction with selected Native American science and education conferences and meetings, in order that more Native Americans can benefit from the proposed genetic education interventions.

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

Journal Article

Dignan M.B., Burhansstipanov L., Bemis L. "Successful Implementation of Genetic Education for Native Americans Workshops at National Conferences." Genetics. February 2005; 169: 516-521.

[PubMed]
Journal Article

Burhansstipanov L., Bemis L., Dignan M. "Native American Cancer Education: Genetic and Cultural Issues." J Cancer Education. 2001a: 16(3); 142-145.

[PubMed]
Journal Article

Burhansstipanov L., Bemis L., Dignan M., Dukepoo F. "Genetics Education: Development of Genetic Education Curriculum for Native American College and University Students." Genetics. 2001; 158:941-948.

[PubMed]
Journal Article

Burhansstipanov L., Bemis L., Kaur J.S., Bemis G. "Sample genetic policy language for research conducted with Native Communities." J Cancer Education. 2005: 20(suppl.): 52-57.

[PubMed]
Journal Article
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] Journal Article
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] Journal Article

Gamito E., Burhansstipanov L., Krebs L.U., Bemis L., Bradley A. "Data Collection Using An Audience Response System." J Cancer Education. 2005; 20(Suppl.): 80-86.

[PubMed]
Journal Article

Burhansstipanov L., Bemis L., Dignan M. &quote;Native American Recommendations for Genetic Research to Be Culturally Respectful." Jurimetrics. 2002: 42(2);149-157.

[PubMed]
Journal Article

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

Journal Article

BURKE, Wylie - Genetic Susceptibility Testing for Breast Cancer [R01 HG001085]

This project will develop knowledge about health care provider and patient perceptions of breast cancer, to guide the clinical use of DNA-based tests to measure inherited susceptibility for this condition. Information about inherited susceptibility to breast cancer could stigmatize individuals with positive test results and alter concepts of personal responsibility for health. As a new and highly sophisticated technology, DNA-based genetic susceptibility testing may also have potential for over-use, thus representing a new threat to cost-effective clinical care. The study will address these issues with questionnaires and interviews to determine: (1) how women receiving routine health care and primary care (PC) providers think about breast cancer risk, and their receptiveness to the use of a test for inherited susceptibility to breast cancer; (2) how women react to receiving risk information about breast cancer based on their family history; and (3) whether PC providers differ from genetics professionals in their approach to counseling concerning genetic risk for breast cancer. In addition, a Policy Group, comprising study investigators and experts in genetics, ethics and health services delivery will be formed and will meet regularly during the course of the project, to review study data and to identify the major policy considerations applicable to the use of the genetic susceptibility testing for breast cancer.

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

Journal Article

Durfy S.J., T.E. Buchanan and W. Burke. "Testing for Inherited Susceptibility to Breast Cancer: A Survey of Informed Consent Forms for BRCA1 and BRCA2 Mutation Testing." Am J Med Genet. 1998; 75: 82-7.

[PubMed]
Journal Article

Durfy, S.J, D.J. Bowen, A. McTiernan, J. Sporleder, and W. Burke. "Attitudes and Interest in Genetic Testing for Breast and Ovarian Cancer Susceptibility in Diverse Groups of Women in Western Washington." Cancer Epidemiology, Biomarkers & Prevention Special Issue. April 1999; 8(4): 369-375. [Pubmed]

[Pubmed]
Journal Article

Pinsky, L.E. and R.A. Deyo. "Clinical Guidelines: A Strategy for Translating Evidence into Clinical Practice," in J. Geyman, R. Deyo and S. Ramsey, eds. Evidence-Based Clinical Practice: Concepts and Approaches. Woburn: Butterworth-Heinemann Medical, 2000. 177p

Book Chapter

Press, N.A., W. Burke, and S.J. Durfy. "How are Jewish Women Different From all Other Women? An Anthropological Perspective on Genetic Susceptibility Testing for Breast Cancer Among Ashkenazi Jewish Women." Health Matrix: Journal of Law-Medicine. 1997: 7(1): 135-162.

[PubMed]
Journal Article

Bars J., J. Hull and W. Burke. "Breast Cancer." Genline, Roberta Pagon, Ed. 1998.

Book Chapter

Burke, W., N. Press and L. Pinsky. [Invited editorial] "BRCA1 and BRCA2: a small part of the puzzle." J Natl Cancer Inst. June 1999; 91(11): 904-905.

[PubMed]
Journal Article

Press N.A., Burke W. "If You Care About Women's Health, Perhaps You Should Care About the Psychosocial Risks of Direct

Marketing of Tamoxifen to Consumers." Effective Clinical Practice. 2000; 3(2): 98-103.

Journal Article

Press N.A., Yasui Y., Reynolds S., Durfy S.J., Burke W. "Women's Interest in Genetic Testing for Breast Cancer Susceptibility May be Based on Unrealistic Expectations." American Journal of Medical Genetics. 2001; 99: 99-110.

Journal Article

Burke W., Pinsky L.E., Press N.A. "Categorizing Genetic Tests to Identify Their Ethical, Legal, and Social Implications." American Journal of Medical Genetics. 2001; 106: 233-240

Journal Article

Gardner, G. C. and L. E. Pinsky (1999). "Perception and attitude of medical school faculty toward participation in university-sponsored continuing medical education."  19(2): 122-128. [Ovid]

[Full Text]
Journal Article

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

Book Chapter

Burke, W., M.J.E. Kahn, J.E. Garber, and F.S. Collins. "'First Do No Harm' also applied to cancer susceptibility testing." Cancer J Sci Amer. 1996; 2:150-152.

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

Pinsky, L.E. "How to Interpret Sensitivity and Specificity," (p.24) in L. Burkholder, M. Migeon and D. Paauw, eds. Internal Medicine Clerkship Guide. St. Louis: Mosby Yearbook, 1999.

Book Chapter

Burke W., Olsen A.H., Pinsky L.E., Reynolds S.E., Press N.A. "Misleading Presentation of Breast Cancer in Popular Magazines." Effective Clinical Practice. March/April 2001; 4(2): 58-64.

[PubMed]
Journal Article

BURKE, Wylie - Genomic Health Care and the Medically Underserved [P50 HG003374]

Genomic research is rapidly producing new opportunities for understanding disease biology, and promises to enhance health care and health outcomes significantly through improved strategies for prediction and prevention, targeted drug treatment, and innovative molecular-based therapies. As with other seminal developments in biomedicine and technology, successful clinical translation requires a careful evaluation of the benefits and harms of specific interventions, in order to encourage uses that improve health outcomes and minimize applications that cause harm or accelerate health care expenditures without commensurate benefit. This challenge is matched by the need to reduce health care disparities. A major concern in the era of genomic health care is to insure that the medically underserved can benefit fully from genome technology, while at the same time not experiencing additional disparities due to genetic discrimination. Yet these groups often experience significant barriers to health care, including limited access to services and culturally inappropriate care. In addition, minority groups may view genomic health care with suspicion, because of historic associations between genetics and racism or because genetic science is viewed as threatening core cultural values. These perceptions, which challenge the acceptability of clinical uses of genetics, need to be taken into account in determining the benefits and appropriate uses of genomic technology. This Center of Excellence in ELSI Research will be dedicated to addressing two overarching themes accompanying the clinical integration of genomics: the need to define criteria for clinical integration that lead to clinically and socially appropriate applications of genomic health care; and the need for a translational pathway that incorporates the goal of reducing health care disparities among the medically underserved. A major product will be the identification and assessment of policy options for addressing these challenges. The specific aims of the Center are to: 1) Identify strategies for assessing the clinical utility of a range of different genomic applications to health care; 2) Assess the implications of different genomic health care applications for medically underserved populations; 3) Describe policy options for the clinical integration of genomes into health care, and their implications for addressing health and health care disparities; 4) Engage ELSI researchers and genetic scientists in on_going conversations about the interacting contributions of the environment, social structural factors, and genetics to health outcomes; 5) Provide training opportunities to encourage the participation of researchers from underrepresented minorities in the Center's research agenda and other ELSI research; and 6) Stimulate collaborative partnerships that result in additional funded research addressing these and related questions.

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

[PubMed]
Journal Article

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]
Journal Article

Goering S, Holland S, Fryer-Edwards K. Transforming genetic research practices with marginalized communities: a case for responsive justice. Hast Center Report, 38(2):43-53. 2008.

[PubMed]
Journal Article

Caulfield, T., et al. (2009). "Race and ancestry in biomedical research: exploring the challenges." Genome Medicine 1(1): 8. [BioMedCentral]

[PubMed]
Journal Article

Henrikson, N. B., Burke, W. & Veenstra, D. L. Ancillary risk information and pharmacogenetic tests: social and policy implications. Pharmacogenomics J. 8, 85–9 (2008).

[PubMed]
Journal Article

McGuire, A. L. & Burke, W. An unwelcome side effect of direct-to-consumer personal genome testing: raiding the medical commons. JAMA J. Am. Med. Assoc. 300, 2669–71 (2008).

[PubMed Central]
Journal Article

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

[PubMed]
Journal Article

Haga, S. B. & Burke, W. Pharmacogenetic testing: not as simple as it seems. Genet. Med. 10, 391–5 (2008).

[PubMed]
Journal Article

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]
Journal Article

Haga, S. B., Thummel, K. E. & Burke, W. Adding pharmacogenetics information to drug labels: lessons learned. Pharmacogenet. Genomics 16, 847–54 (2006).

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

James, R. D., Yu, J.-H., Henrikson, N. B., Bowen, D. J. & Fullerton, S. M. Strategies and stakeholders: minority recruitment in cancer genetics research. Community Genet. 11, 241–9 (2008).

[PubMed]
Journal Article
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] Journal Article

Jaja, C., Burke, W., Thummel, K., Edwards, K. & Veenstra, D. L. Cytochrome p450 enzyme polymorphism frequency in indigenous and native american populations: a systematic review. Community Genet. 11, 141–9 (2008).

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

Veenstra, D. L., et al. (2010). "A formal risk-benefit framework for genomic tests: facilitating the appropriate translation of genomics into clinical practice." Genet Med 12(11): 686-693. [PubMed]

[PubMed]
Journal Article
Beskow LM, Burke W . Offering individual genetic research results: context matters. Sci Transl Med, 2 (38):38cm20. 2010. [PubMed Central] Journal Article
Burke W . Clinical validity and clinical utility of genetic tests. Curr Protoc Hum Genet, Chapter 9 (Unit 9):9.15.1-3. 2009. [PubMed] Journal Article
Burke W, Diekema DS . Ethical issues arising from the participation of children in genetic research. J Pediatr, 149 (1 Suppl):S34-8. 2006. [PubMed] Journal Article
Burke W, Laberge AM, Press N . Debating clinical utility. Public Health Genomics, 13 (4):215-23. 2010. [PubMed] Journal Article
Burke W, Press N . Ethical obligations and counseling challenges in cancer genetics. J Natl Compr Canc Netw, 4 (2):185-91. 2006. [PubMed] Journal Article
Burke W, Tarini B, Press NA, Evans JP . Genetic screening. Epidemiol Rev, 33 (1):148-64. 2011. [PubMed Central] Journal Article

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

[PubMed]
Journal Article
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] Journal Article

Burke W, Zimmern R. Moving Beyond ACCE: An Expanded Framework for Genetic Test Evaluation. A Paper for the United Kingdom Genetic Testing Network. 2007.

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

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]
Journal Article
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] Journal Article

Yu J-H, Goering S, Fullerton M. Race Based Medicine and Justice as Recognition: Exploring the Phenomenon of BiDil. Cambridge Quarterly of Health Care Ethics, 2008. [PubMed]

[PubMed]
Journal Article
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] Journal Article

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

[PubMed]
Journal Article
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] Journal Article

Fryer-Edwards K, Fullerton SM. Relationships with test-tubes: where's the reciprocity? American Journal of Bioethics, 6(6):36-38. 2006

[PubMed]
Journal Article

Shields, A. E., Burke, W. & Levy, D. E. Differential use of available genetic tests among primary care physicians in the United States: results of a national survey. Genet. Med. 10, 404–14 (2008).

[PubMed Central]
Journal Article

Veenstra DL, Burke W. Pharmacogenomics and public health. Public Health Genom, 2008. [PubMed]

[PubMed Central]
Journal Article
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] Journal Article

BURKE, Wylie - Center for Genomics and Healthcare Equality [P50 HG003374]

Genomic research is rapidly expanding our knowledge about the genetic contributors to health and disease. A broad range of health benefits will flow from this research, including tests to predict disease risk and guide drug use, innovative therapies, and improved understanding of the interactions between genetic and environmental contributors to health. However, the specific benefits will vary for different diseases and populations, influenced by the nature of the genetic and non-genetic contributors, and the availability and safety of therapeutic options. The likelihood of benefit for a particular individual or group will also be influenced by social, political and economic factors such as access to health care, meaning attached to genetic risk information, and cost and acceptability of specific interventions. In particular, medically underserved and marginalized populations may experience greater barriers to receiving benefit from genomic health applications, with the potential for genomics to exacerbate existing health disparities. In this renewal application of the Center for Genomics and Healthcare Equality, we will build on our existing work to develop methods for enhancing the benefits of genomic translation, with particular attention to the use of genomic technology to address population health and health disparities. The specific aims of our center are to: (1) Characterize the range of challenges and opportunities in the translation process from genomic discovery to health benefit with an emphasis on targeting benefits for medically underserved populations; (2) Develop methods to build and evaluate university - community and interdisciplinary partnerships, including deliberative processes and strategies to identify common ground; (3) Develop tools to assist decision-making about the clinical use and reimbursement of genomic health applications; (4) Provide training opportunities to encourage the participation of researchers from underrepresented minorities in the Center's research agenda and other ELSI research; (5) Stimulate collaborative partnerships that result in additional funded research addressing these and related questions. PUBLIC HEALTH RELEVANCE: This project will provide information and tools for researchers, clinicians, community members and policymakers, in order to improve the scope of benefits from genomic health research.

McGuire, A. L., Evans, B. J., Caulfield, T. & Burke, W. Science and regulation. Regulating direct-to-consumer personal genome testing. Science (80-. ). 330, 181–2 (2010).

[PubMed]
Journal Article

McGuire, A. L. et al. Ethical and practical challenges of sharing data from genome-wide association studies: the eMERGE Consortium experience. Genome Res. 21, 1001–7 (2011).

[PubMed Central]
Journal Article

McGrath, B. B. & Edwards, K. L. When family means more (or less) than genetics: the intersection of culture, family and genomics. J. Transcult. Nurs. 20, 270–7 (2009).

[PubMed Central]
Journal Article

Clayton, E. W. et al. Managing incidental genomic findings: legal obligations of clinicians. Genet. Med. 15, 624–9 (2013).

[PubMed Central]
Journal Article

Kaye, J. et al. Research priorities. ELSI 2.0 for genomics and society. Science (80-. ). 336, 673–4 (2012).

[PubMed]
Journal Article

Burke, W., Trinidad, S. B. & Clayton, E. W. Seeking Genomic Knowledge: The Case for Clinical Restraint. Hastings Law J. 64, 1650–1664 (2013).

[PubMed Central]
Journal Article

Wang, C., Gordon, E. S., Norkunas, T., Wawak, L., Liu, C. T., Winter, M., . . . Bowen, D. J. (2016). A randomized trial Examining The Impact Of Communicating Genetic And Lifestyle Risks For Obesity. Obesity (Silver Spring), 24(12), 2481-2490. doi:10.1002/oby.21661

[PubMed]
Journal Article

Burke, W. et al. The translational potential of research on the ethical, legal, and social implications of genomics. Genet. Med. 17, 12–20 (2015).

[PubMed]
Journal Article

James, R. et al. Exploring pathways to trust: a tribal perspective on data sharing. Genet. Med. 16, 820–6 (2014).

[PubMed]
Journal Article

Segrest, V., James, R., Madrid, T. & Fernandes, R. Launching native health leaders: students as community-campus ambassadors. Prog. Community Heal. Partnerships 4, 81–6 (2010).

[PubMed Central]
Journal Article

Roth, J. A. et al. Stakeholder perspectives on a risk-benefit framework for genetic testing. Public Health Genomics 14, 59–67 (2011).

[PubMed Central]
Journal Article

Tarini, B. A., Tercyak, K. P., & Wilfond, B. S. (2011). Commentary: Children and predictive genomic testing: disease prevention, research protection, and our future. Journal of Pediatric Psychology, 36(10), 1113–21. doi:10.1093/jpepsy/jsr040

[PubMed]
Journal Article

Tarini, B. A., Burke, W., Scott, C. R., & Wilfond, B. S. (2008). Waiving informed consent in newborn screening research: balancing social value and respect. American Journal of Medical Genetics Part C: Seminars in Medical Genetics, 148C(1), 23–30. doi:10.1002/ajmg.c.30164

[PubMed]
Journal Article

Rohlfs, R. V, Fullerton, S. M. & Weir, B. S. Familial identification: population structure and relationship distinguishability. PLoS Genet. 8, e1002469 (2012).

[PubMed Central]
Journal Article

Tabor, H. K., Berkman, B. E., Hull, S. C. & Bamshad, M. J. Genomics really gets personal: how exome and whole genome sequencing challenge the ethical framework of human genetics research. Am. J. Med. Genet. Part A 155A, 2916–24 (2011).

[PubMed]
Journal Article
Burke, W . Commentary to "My Identical Twin Sequenced Our Genome": Cautionary Genomics.. J Genet Couns., 2017. [PubMed] (J Genet Couns. 2017 Apr;26(2):279-280. doi: 10.1007/s10897-016-0054-7. Epub 2016 Dec 20.) Journal Article

Fullerton SM. On the absence of biology in philosophical considerations of race. In Race and
Epistemologies of Ignorance, Eds S. Sullivan and N Tuana, SUNY Series on Philosophy and Race, eds. R Bernasconi and TD Sharpley-Whiting, SUNY Press: Albany, NY. May 10, 2007. 284p.

Book Chapter

West KM, Blacksher E, Burke W. Genomics, Health Disparities, and Missed
Opportunities for the Nation's Research Agenda. JAMA. 2017 May
9;317(18):1831-1832. doi: 10.1001/jama.2017.3096. PubMed PMID: 28346599.

[JAMA]
Journal Article

Guzauskas, G. F., et al. (2012). "A risk-benefit assessment of prasugrel, clopidogrel, and genotype-guided therapy in patients undergoing percutaneous coronary intervention." Clin Pharmacol Ther 91(5): 829-837. [PubMed]

[PubMed]
Journal Article

McGuire, A. L. & Burke, W. Health system implications of direct-to-consumer personal genome testing. Public Health Genomics 14, 53–8 (2011).

[PubMed Central]
Journal Article

Burke, W. et al. Recommendations for returning genomic incidental findings? We need to talk! Genet. Med. 15, 854–9 (2013).

[PubMed Central]
Journal Article
Fohner AE, Garrison NA, Austin MA, Burke W. . Carnitine palmitoyltransferase 1A P479L and infant death: policy implications of emerging data.. Genet Med, 19 (8):851-857. 2017. [PubMed] Journal Article
Goodman JL, Amendola LM, Horike-Pyne M, Trinidad SB, Fullerton SM, Burke W, Jarvik GP. . Discordance in selected designee for return of genomic findings in the event of participant death and estate executor.. Mol Genet Genomic Med, 5 (2):172-176. 2017. [PubMed] Journal Article

BURKE, Wylie - Evaluating Use of Genetic Information: A Model Process [R01 HG002263]

Multiple elements contribute to the successful translation of genetic advances into improved health outcomes. This project will address these elements through analysis of a series of genetic testing case examples. The specific aims are: 1) to identify a series of case examples that demonstrate a spectrum of plausible uses of genetic information to improve health outcomes; 2) to convene an expert Working Group that will work collaboratively with the Investigator Team to develop a model process that incorporates provisional clinical practice guidelines for the case examples, an inventory of ethical, legal and social issues raised for each case example, decision models based on the provisional guideline and ELSI inventory to assess the implications of uncertainties in key parameters of the testing process, compares the use of genetic information to accepted, non-genetic interventions in terms of medical, economic and social costs and benefits for each case example, and identifies research and educational priorities related to each case example; 3) to identify the characteristics that define genetic tests that are likely to improve health outcomes; 4) to compare the results of the different case analyses to determine the extent to which genetic testing requires special measures for informed consent and protection of privacy and patient autonomy; and 5) to conduct an evaluation of the model process within a large health care system.

Burke W., Pinsky L.E., Press N.A. "Categorizing Genetic Tests to Identify Their Ethical, Legal, and Social Implications." American Journal of Medical Genetics. Fall 2001; 106: 233-240.

[PubMed]
Journal Article
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] Journal Article

Ramsey, S. D., Burke, W. & Clarke, L. An economic viewpoint on alternative strategies for identifying persons with hereditary nonpolyposis colorectal cancer. Genet. Med. 5, 353–63 (2003).

[PubMed Central]
Journal Article

BURKE, Wylie - Guiding Clinicians in Genetic Assessment of Cancer Risk [R01 HG001085]

The overall goals of this project are to develop relevant, evidence-based clinical practice guidelines for genetic testing for BRCA1/2 through a consensus process involving community care practitioners and oncologists, and to evaluate the effect of the guidelines on clinical practice. The project will convene a Guidelines Group. Educational materials will be developed based on the guidelines, to aid clinicians in pedigree assessment, interpretation of the risks and benefits of BRCA1/2 testing, and use of cancer surveillance or other individuals with increased cancer risk. Educational seminars based on these materials will be presented to community physicians. These materials will be assessed using standardized patient encounters.

Spanier B.W.M., Bruno M.J., Burke W., et al. "Genetic testing." New Engl J Med. 348(11): 1066-1066 March 13, 2003.

Journal Article

Displaying 201 - 300 of 1985 publications.

Last updated: January 24, 2019