There has been an ongoing privacy and ethics debate over the unauthorized or undisclosed use of newborns’ blood samples for purposes other than the standard disease-screening, which includes about 30 conditions. Now, there’s a trial study, called BabySeq, from Brigham and Women’s Hospital that “uses genomic sequencing to screen for about 1,800 conditions, including some cancers,” CBS Miami reports.
The privacy questions are clear: What happens to the DNA data — who keeps it, in what form, for how long — and who has access to it? The participants in the study have chosen to participate with, presumably, complete knowledge of the answers to these questions. But consider if the screening of 1,800 conditions, rather than the current 30, became the legal standard. This is a significant amount of highly personal information and there are substantial privacy issues.
BabySeq co-director, Dr. Robert Green, has raised some of these issues. “We can’t predict what kind of discrimination is going to be occurring by the time your child grows up,” Green said. “We can’t predict whether there’s some sort of privacy breaches, this information gets out and is used against your child in some sort of future scenario. And we, most importantly, we can’t predict the information’s accurate.” Read more »