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.
DNA Podcast: Genetic Testing and Adolescents...
Medical Geneticist Dr. Robert Marion on Writing...
Newborn Genetic Screening in Minnesota...
American College of Medical Genetics Policy Statement on Direct-to-Consumer Genetic Testing...
Knowledge about Genetic Risk is Power or is it Fear?...
Which came first? The genes or the divorce?...
Sorry, the comment form is closed at this time.
Search Eye on DNA
- Genetic Genealogy on Faces of America
- DNA Network Tweet Cloud
- Genetics = Real Science
- Larry David’s DNA Test
- Lopez Tonight First Late-Night Show to Offer DNA Testing
- American Genes Don’t Exist
- Knowledge about Genetic Risk is Power or is it Fear?
- Murderer Gets Reduced Sentence Because His Genes Made Him Do It
- Video: Knome’s Ari Kiirikki Speaks with Medgadget
- DNA Toys: Ben 10 and Digimon Digivice
- 100 Facts About DNA
- Salaries for Jobs in Genetics
- Fetal Gender DNA Tests Answer Common Pregnancy Question...Or Not
- What does DNA mean to you?
- Eye on DNA Interview: Dr. Tzung-Fu Hsieh of RedTracer DNA Test for the Red Hair Gene, MC1R
- How To Determine Paternity Without A DNA Test
- Books About DNA: The Crime of Reason by Robert B. Laughlin
- Genetically Modified Organisms Bring in the Cash
- Navigenics Introduces Physician Portal and Annual Insight Service
- People Who’ve Had Their Genomes Sequenced
09/29/2009 07:03 am
- Larry David’s DNA Test
11/17/2009 02:52 am
- 23andMe DNA Tests for $399, Down From $999
09/10/2008 04:33 am
- Crazy Genetic Marketing Ideas
07/05/2008 09:14 pm
- Parenting Children Using Genetic Tests
05/18/2009 02:09 am
- Business of DNA
- DNA @ Google Answers
- DNA and Disease
- DNA and Genealogy
- DNA and the Law
- DNA Around the World
- DNA Fun
- DNA in General
- DNA Inventions and Gadgets
- DNA Lab Talk
- DNA Podcasts and Videos
- DNA Quotes and Excerpts
- DNA Testing
- Gene Therapy
- Genetic Engineering
- Genetically Modified Foods and Organisms
- Jobs Involving DNA
- Personalities with DNA
- Polls About DNA
- January 2010
- November 2009
- October 2009
- September 2009
- August 2009
- July 2009
- June 2009
- March 2009
- February 2009
- January 2009
- December 2008
- November 2008
- October 2008
- September 2008
- August 2008
- July 2008
- June 2008
- May 2008
- April 2008
- March 2008
- February 2008
- January 2008
- December 2007
- November 2007
- October 2007
- September 2007
- August 2007
- July 2007
- June 2007
- May 2007
- April 2007
- The Seven Stones
- Women in Science
- HUGO Matters
- Let’s Get Personal
- A Blog Around The Clock
- QUEST Science Blog
- Mary Meets Dolly