Genetic Ethics - testing and storing our kids’ DNA
May 7, 2008 by Elaine
Filed under Legislation, Policies, Ethics, Law
Scientists and policy developers at the Translating ELSI, Ethical Legal Social Implications of Human Genetics Research conference have been mulling over the myriad of ethical arguments over testing and storing our kids’ DNA.
The biggest driver for the advancement of genetic testing is the ‘early detection improves outcomes’ argument and if an individual is found to be at risk of a particular disease then life-long surveillance is a remedy.
However, consider the scenario that you’ve just discovered that your 9 year old daughter has a risk of developing breast and ovarian cancer and your 6 year son is at risk of early-onset Alzheimer’s. Where do you go for advice? What can you do?
Another unique consideration is what happens to the biobank samples in the future when the child biobank donor has grown into an adult? What is the scope of parental permission, and is it necessary to obtain consent again when a child grows up are important questions. Also, what if researchers wish to use a sample donated earlier but they are unable to locate the individual who gave the sample? Is it ethical to use these or should the sample be destroyed?
Before these situations become more common, researchers and physicians planning to develop or use genetic testing technologies and information must find ways to talk to parents who are asking questions about just what will happen with their child’s samples and genomic data.
Elaine Warburton www.geneticsandhealth.com
I attended the meeting and found the discussions very pertinent to today’s rapid advances in genomics. Those who are interested in the DNA that could be obtained from the blood spots taken at newborn testing (or from saved umbilical cord blood) should check their own hospital or birthing center to learn what their policy is about storing and releasing the blood spot DNA. Standards vary considerably.
Also pertinent is whether your HMO collects and stores DNA samples–with or without your permission. You’ll probably be surprised at how common it is to take and keep DNA samples.
I’m running a series of posts about the ELSI meeting at http://www.geneforum.org.