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 …read more

Following my recent article on ethical guidelines for informed consent in genomic studies, a group of scientists met at the Translating ESLI conference in Cleveland to debate this whole ethical argument. This issue is particularly critical for genome-wide association studies and in establishing and using large biobanks.
It was universally acknowledged that consent forms are difficult to read for participants who do not have reading skills beyond middle school or high school, for example. As a result, these paticipants may be unaware of what exactly the research could mean to them.
Laura Beskow, a researcher at Duke University’s Institute for Genome Sciences and Policy worked …read more

 
Leon Kass served as chairman of the bioethics council charged with advising US President George W. Bush on many “hot” bioscience issues such as stem cell research and cloning.
Noted for his frankness and pretty much misogynistic ideals, once you cut through all this, his arguments do make some sense.  For example:
“There’s a large cultural bias toward progress, a belief that innovation is good innovation. …  I’m inclined to a more classically tragic view in the sense that all the good comes with some bad.”
AND
“In the biomedical area, the people who are bringing you all the novelties occupy the moral high ground. They …read more