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.”
Currently, the federal Genetic Information Nondiscrimination Act prohibits the use of genetic data to determine insurance premiums, eligibility for insurance, or employment.
However, this could change. Earlier this year, Rep. Virginia Foxx (R-N.C.) introduced H.R. 1313, the Preserving Employee Wellness Programs Act, which would allow employers to penalize workers who do not provide their private genetic information (as well as the personal genetic data of their families) as part of the wellness programs. The bill, which has co-sponsors, would exempt workplace wellness programs from: “(1) limitations under the Americans with Disabilities Act of 1990 on medical examinations and inquiries of employees, (2) the prohibition on collecting genetic information in connection with issuing health insurance, and (3) limitations under the Genetic Information Nondiscrimination Act of 2008 on collecting the genetic information of employees or family members of employees.”
And this is just one bill that has been introduced in the House. There are any number of other ways that GINA and ADA protections for medical information could be undermined or rejected if Congress chose to pass bills to do so and the president chose to sign them into law.
The creation of any database comes with privacy and security concerns. (I discussed the problems with reidentification of “deidentified” data previously.) We’ve seen myriad reports of credit card, banking and other databases being hacked over the past year. And security breaches of medical databases are on the rise. A recent report suggests a reason: Electronic health-care “records contain not just your insurance info—which can be used for fraudulent billing and prescriptions—but also Social Security, driver’s license and credit card numbers.”
Now, the question is: What if the rules on newborn blood screenings changed? The answer: If there are not substantial legal protections in place, a baby’s genetic data could, for a lifetime, haunt prospects for employment, insurance, and more.