Whole-genome association studies for multigenic diseases: ethical dilemmas arising from commercialization--the case of genetic testing for autism
David Bourget (Western Ontario)
David Chalmers (ANU, NYU)
Rafael De Clercq
Jack Alan Reynolds
Learn more about PhilPapers
Journal of Medical Ethics 36 (7):440-444 (2010)
This paper examines some ethical issues arising from whole-genome association studies for multigenic diseases, focusing on the case of autism. Events occurring following the announcement of a genetic test for autism in France (2005–2009) are described to exemplify the ethical controversies that can arise when genetic testing for autism is applied prematurely and inappropriately promoted by biotech companies. The authors argue that genetic tests assessing one or a few genes involved in highly multigenic disorders can only be useful if: (1) the genetic linkage found in the scientific study must be statistically convincing, reproducible and also applicable to the population to which the individual considered belongs (scientific validity); (2) the relative risk conferred by the ‘high-risk’ allele should be high enough to be significant to the patient (significant impact); (3) use of the test should lead to some improvement of outcome for the patient, resulting from adapted treatment if available, or at least from adjustment of lifestyle (or life goals) prompted by the new knowledge generated (clinical utility). Decisions concerning genetic testing for autism involve scientific judgement, value judgement and good knowledge of a constantly evolving therapeutic environment. The implementation of genetic tests for highly multigenic diseases thus requires strong mechanisms to ensure that they are used in a fashion that can benefit patients, and these mechanisms must be able to cope with rapid progress in scientific knowledge and therapeutic intervention
|Keywords||No keywords specified (fix it)|
|Categories||categorize this paper)|
Setup an account with your affiliations in order to access resources via your University's proxy server
Configure custom proxy (use this if your affiliation does not provide a proxy)
|Through your library|
References found in this work BETA
No references found.
Citations of this work BETA
No citations found.
Similar books and articles
Eline M. Bunnik, A. Cecile J. W. Janssens & Maartje H. N. Schermer (2013). Informed Consent in Direct-to-Consumer Personal Genome Testing: The Outline of A Model Between Specific and Generic Consent. Bioethics 27 (3):343-351.
Eline Bunnik, Maartje Schermer & A. Cecile Janssens (2011). Personal Genome Testing: Test Characteristics to Clarify the Discourse on Ethical, Legal and Societal Issues. [REVIEW] BMC Medical Ethics 12 (1):11-.
David L. Wiesenthal & Neil I. Wiener (1996). Privacy and the Human Genome Project. Ethics and Behavior 6 (3):189 – 202.
Barabara Biesecker (1998). Future Directions in Genetic Counseling: Practical and Ethical Considerations. Kennedy Institute of Ethics Journal 8 (2):145-160.
Suli Sui & Margaret Sleeboom-Faulkner (2007). Commercial Genetic Testing in Mainland China: Social, Financial and Ethical Issues. [REVIEW] Journal of Bioethical Inquiry 4 (3):229-237.
Paula Boddington & Susan Hogben (2006). Working Up Policy: The Use of Specific Disease Exemplars in Formulating General Principles Governing Childhood Genetic Testing. [REVIEW] Health Care Analysis 14 (1):1-13.
Rebecca Bennett (2001). Antenatal Genetic Testing and the Right to Remain in Ignorance. Theoretical Medicine and Bioethics 22 (5):461-471.
Angela Davey, Ainsley Newson & Peter O’Leary (2006). Communication of Genetic Information Within Families: The Case for Familial Comity. [REVIEW] Journal of Bioethical Inquiry 3 (3):161-166.
Ludvig Beckman (2004). Are Genetic Self-Tests Dangerous? Assessing the Commercialization of Genetic Testing in Terms of Personal Autonomy. Theoretical Medicine and Bioethics 25 (5-6):387-398.
Kathryn Edge (2013). The Benefits and Potential Harms of Genetic Testing for Huntington's Disease: A Case Study. Human Reproduction and Genetic Ethics 14 (2):14 - 19.
Chris MacDonald & Bryn Williams-Jones (2002). Ethics and Genetics: Susceptibility Testing in the Workplace. [REVIEW] Journal of Business Ethics 35 (3):235 - 241.
Bryn Williams-Jones & Vural Ozdemir (2008). Challenges for Corporate Ethics in Marketing Genetic Tests. Journal of Business Ethics 77 (1):33 - 44.
John A. Robertson (2003). The $1000 Genome: Ethical and Legal Issues in Whole Genome Sequencing of Individuals. [REVIEW] American Journal of Bioethics 3 (3):35-42.
Added to index2010-09-13
Total downloads6 ( #218,107 of 1,140,341 )
Recent downloads (6 months)1 ( #140,127 of 1,140,341 )
How can I increase my downloads?