January 1, 1970 (Vol. , No. )
Taralyn Tan Ph.D. Curriculum Fellow Harvard Medical
You can probably remember the last time that you received a vaccine or had blood drawn for clinical tests (always a pleasant experience…). Perhaps you can even recall the pricks and pokes you had to endure before you could attend school. But in addition to these health precautions and vaccination programs, there is another public safety measure that you surely do not remember. It is the heel prick test, and it is crucial for the early detection of rare genetic disorders. For this mandatory test, a drop of blood is collected from a newborn’s heel onto a paper card. Subsequently, DNA collected from that blood is tested for at least twenty-nine rare genetic diseases. This screen identifies approximately 5,000 newborns each year that require early medical intervention to prevent death or minimize the severity of the infants’ conditions.
Most people won’t deny the value of the genetic testing following the blood collection from newborns. Yet, the practice of the heel prick test – or rather, what becomes of the cards containing the collected blood – has recently come under fire. In some states, the cards with the infants’ blood are stored indefinitely, a process referred to as DNA warehousing. So why keep the samples? Well, in the short term, samples are predominantly kept as a backup, in case any of the genetic tests need to be repeated. Long-term storage, on the other hand, allows geneticists and neonatology researchers access to an incredible genetic database. These blood spot samples can be utilized to develop new genetic tests, to learn more about existing genetic disorders, and to study factors such as the mother’s health and in utero environment in relation to rare disorders. Despite these noble intentions, the process of DNA warehousing has angered a sect of the general population because in most cases, parents are not aware that the blood sample from their child is being kept at all.
So there’s the heart of the matter – is it ok for hospitals to keep newborns’ blood (and potentially give it to scientists for research) without the parents’ consent? I would have to say no, that’s not really ethical. For as important as “consent” is in every other aspect of biomedical research, it only seems right that parents should know about the potential warehousing of their child’s DNA and be able to consent to it before it occurs. This simple modification to the current procedure (i.e. asking the parents) is not difficult to enact, and it seems that it would satisfy a large percentage of parents. According to a study by Case Western Reserve University’s bioethicist Aaron Goldenberg, 75% of parents would be willing to have their child’s blood used in biomedical research, if they were asked beforehand.
On the other side of the coin, that leaves 25% of parents who are unwilling to do so, which I find troubling. I mentioned earlier in this piece that I doubt anybody would dispute the value of the barrage of genetic tests that protect newborns from missed diagnoses of rare and often fatal (if not treated early) genetic diseases. However, it seems that for a quarter of the parents out there, “scientific value” and “self interest” are synonymous. So, it’s ok for hospitals to screen your child’s blood as long as it is helping your family, but as soon as scientists want to use the blood to help develop tests that could help other families, then it is not acceptable? This is either a case of distrust of scientists or selfishness, but in either scenario, people with these attitudes are hurting the advancement of biomedical science.
In the case of scientific distrust, the general public needs to stop clinging to their irrational paranoia of “evil scientists”, as propagated by science fiction and horror films. “Performing research” on your child’s DNA is not equivalent to making clones of your child, creating chimerical organisms, or synthesizing biological weapons. And as for the discomfort of having your child’s DNA in a catalog, parents should rest assured that the cards are catalogued by health department ID number rather than by name. Thus, there is no way for a researcher (or anybody else who comes in contact with the card) to gather any personal information about one’s child. As for selfishness, well, I think it’s pretty self-explanatory. If parents don’t take issue with scientists “performing research” on their child’s DNA to search for genetic disorders, then they should also be willing to let researchers use that drop of blood to attain other valuable scientific information.
Am I defending the practice of clandestine DNA warehousing? No. As I mentioned, scientists should have been honest with parents from the beginning. (Lapses in judgment such as this certainly aren’t helping to debunk the “untrustworthy scientist” stereotype.) Yet, while I realize that the concept of “consent” inherently provides the freedom of choice, I am of the opinion that in the case of the heel prick test, there is really only one morally responsible course of action. If you benefit from science, you should also do your part to contribute, and I am saddened that so many people who have their hands out to receive will simultaneously deny hope of medical advances to others.