I came across this article yesterday regarding an ethical dilemma that researchers are finding themselves in surrounding the use of left over blood from newborn screening tests.  At question is whether or not researchers should be allowed to use the blood samples left over from newborn screenings as a research tool without written consent from the parents.  Currently, most states allow these blood samples to be banked and used in research.  All the identifying information is stripped from the sample and there is no real way for the information gleaned from the research to be traced back to the original person.  However, parents are up in arms about this and have taken the issue before the courts in several states, arguing that it violates their child’s privacy and puts their child’s genetic information out there for anyone to find.  Courts in several states, including Texas and Michigan, have agreed with the parents and forced millions of leftover samples to be thrown out and have developed a consent form so that parents have the option to opt-out if they do not wish to have their child’s sample stored and used for future research.

Although I see the point the parents are making about the privacy concerns, I think the benefits of this program far outweigh the risks, especially since the there is no identifying information attached to the samples once it is banked.  Newborn screening tests are vital for identifying potentially life threatening illnesses and conditions.  Through these screening tests doctors are able to identify illnesses and treat them right away in order to save a life, when before these screening tests were routinely done the child would likely have died.  My fear, and the fear of many, is that this current uproar will result in parents opting out of getting the screenings done all together and will result in too many babies leaving the hospital with potentially life threatening illnesses and conditions.  Also, the additional research done on the left over samples is essential to developing new screening tests, learn more about the illnesses and conditions we currently screen for and identify new conditions and illnesses that need to be added to the screening.  Our babies lives depend on this research.

I think what states, doctors and researchers need to do is to educate the public on the importance of these screening tests and the importance of the additional research being done on the left over samples.  Probably every state will need to develop a consent form and give parents the option to opt-out of the program as some parents just won’t be comfortable knowing their child’s left over blood sample is being used. However, I think most parents, if comfortable in the knowledge that their child’s information is stripped from the sample before it leaves the hospital, will opt-in to the banking program and researchers will be able to continue the research that allows for groundbreaking, life saving discoveries.

What are your thoughts on this topic?  Do you think it okay to use the left over samples for research?  Do you think there should be a consent form developed?   Would you opt in or out if given the choice?