by Dr. Hsien-Hsien Lei
Posted January 28, 2008 in DNA Testing
The February 15, 2008 issue of the American Journal of Medical Genetics is devoted to ethics and policy regarding children and genetics. Some of the articles touch on topics I’ve covered here at Eye on DNA, including:
Waiving informed consent in newborn screening research: Balancing social value and respect (Eye on DNA post 1, post 2)
Waiving the informed consent requirement facilitates the development of flexible strategies for informing and educating parents about NBS research that reflect the logistics of population-based NBS screening. A strict interpretation of the regulatory requirement of informed consent may create significant logistical and financial barriers to adequate evaluation of NBS tests.
Ethical implications of including children in a large biobank for genetic-epidemiologic research: A qualitative study of public opinion (One of the authors is a former Johns Hopkins classmate of mine – Dr. David Kaufman. Hi, Dave!)
Many of the concerns expressed by participants [of focus groups] mirrored those addressed in pediatric research guidelines. These concerns included minimizing children’s fear, pain, and burdens; whether to include young children; and how to obtain children’s assent. …To successfully include children, proposed cohort study would need to address children’s changing capabilities and rights as they grow and reach the age of consent.
You’re one of us now: Young people describe their experiences of predictive genetic testing for Huntington disease (HD) and familial adenomatous polyposis (FAP) (See Eye on DNA interview of Kathy Flake whose mother had HD.)
Harms described included knowledge of future illness, witnessing distress in parents, negative effects on family relationships and friendships, effects upon employment and school, experiencing regret, feeling guilty and having to confront difficult issues. Benefits included knowledge of gene-negative status, relief from uncertainty, witnessing relief in parents, feeling able to plan for the future, positive effects on family relationships and friendships, feeling empowered and experiencing a sense of clarity about what is important in life.
Should genetic testing for BRCA1/2 be permitted for minors? Opinions of BRCA mutation carriers and their adult offspring (Eye on DNA, press release)
Combining the responses of parents and offspring, 40 percent supported genetic testing of minors with half in favor only in certain circumstances. A majority of sons and daughters â€” potential consumers of genetic testing, supported testing minors.
NB: The ultrasound above is of my own to-be newborn due June 2008.
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American College of Medical Genetics Policy Statement on Direct-to-Consumer Genetic Testing...
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