David Bourget (Western Ontario)
David Chalmers (ANU, NYU)
Rafael De Clercq
Jack Alan Reynolds
Learn more about PhilPapers
Journal of Medical Ethics 38 (3):163-167 (2012)
The ability to sequence individual genomes is leading to the identification of an increasing number of genetic risk factors for serious diseases. Knowledge of these risk factors can often provide significant medical and psychological benefit, but also raises complex ethical and social issues. This paper focuses on one area of rapid progress: the identification of mutations causing long QT syndrome and other cardiac channel disorders, which can explain some previously unexplained deaths in infants (SIDS) and children and adults (SUDS) and prevent others from occurring. This genetic knowledge, discovered posthumously in many cases, has implications for clinical care for surviving family members who might carry the same mutations. The information obtained from genetic testing, in the context of personal and family history, can guide individually tailored interventions that reduce risk and save lives. At the same time, obtaining and disclosing genetic information raises difficult issues about confidentiality and decision making within families. We draw on the experience of the Montefiore-Einstein Center for Cardiogenetics, which has played a leading role in the genetic diagnosis and clinical management of cardiac channel diseases, to explore some of the challenging ethical questions arising in affected families with adolescent children. We focus on the related issues of (1) family confidentiality, privacy and disclosure and (2) adolescent decision making about genetic risk, and argue for the value of interdisciplinary dialogue with affected families in resolving these issues
|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
Mariam Ghosn (2007). Predictive Testing for Huntington's Disease in Adolescents: Part 2. Chisholm Health Ethics Bulletin 12 (3):3.
Nancy Green (2012). Argumentation and Risk Communication About Genetic Testing: Challenges for Healthcare Consumers and Implications for Computer Systems. Journal of Argumentation in Context 1 (1):113-129.
Robert F. Weir & Jay R. Horton (1995). Genetic Research, Adolescents, and Informed Consent. Theoretical Medicine and Bioethics 16 (4).
Marcia Riordan (2012). Maternal Serum Testing: Is Invasive Testing a Passing Era. Bioethics Research Notes 24 (1):7.
Cheryl Berg & Kelly Fryer-Edwards (2008). The Ethical Challenges of Direct-to-Consumer Genetic Testing. Journal of Business Ethics 77 (1):17 - 31.
Chris MacDonald & Bryn Williams-Jones (2002). Ethics and Genetics: Susceptibility Testing in the Workplace. [REVIEW] Journal of Business Ethics 35 (3):235 - 241.
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.
A. Boyce & P. Borry (2009). Parental Authority, Future Autonomy, and Assessing Risks of Predictive Genetic Testing in Minors. Journal of Bioethical Inquiry 6 (3):379-385.
Rebecca Bennett (2001). Antenatal Genetic Testing and the Right to Remain in Ignorance. Theoretical Medicine and Bioethics 22 (5):461-471.
Lori D’Agincourt-Canning (2004). Genetic Testing for Hereditary Cancer: Challenges to Ethical Care in Rural and Remote Communities. [REVIEW] HEC Forum 16 (4):222-233.
A. Kent (2000). Promoting Safe and Effective Genetic Testing in the United States. Final Report of the Task Force on Genetic Testing: Edited by Neil A Holtzmann and Michael S Watson, Baltimore, John Hopkins University Press, 1998, 186 Pages, Pound23.00 (Pb). [REVIEW] Journal of Medical Ethics 26 (6):482-482.
Bryn Williams-Jones & Vural Ozdemir (2008). Challenges for Corporate Ethics in Marketing Genetic Tests. Journal of Business Ethics 77 (1):33 - 44.
David L. Wiesenthal & Neil I. Wiener (1996). Privacy and the Human Genome Project. Ethics and Behavior 6 (3):189 – 202.
Sorry, there are not enough data points to plot this chart.
Added to index2011-10-14
Recent downloads (6 months)0
How can I increase my downloads?