The interwebs are abuzz with glowing reviews for Rebecca Skloot’s new book “The Immortal Life of Henrietta Lacks”. I’m currently #37 on the library reserve list (sorry, Rebecca, but I’m a poor grad student and I can’t afford to buy it). The book tells the story of the HeLa cell line, which are cells that were taken from a patient without her consent. These cells have led to important medical breakthroughs. But how isolated of an incident is this?
As it turns out, things like this are still happening. Just last week CNN.com had a story entitled the Government has your baby’s DNA. Most people are aware that newborns in this country are routinely screened (which is not diagnostic and has a high rate of false positives) for a variety of genetic diseases. While some object to this testing, I think it’s a great idea because early recognition of a disease may be key to treating it. These tests have saved or improved the quality of many lives. For example, testing can reveal if a child has PKU, and if the child eats a specially formulated diet, the disease can be easily managed. This policy is largely considered to be a public health success story, and I endorse it 100%.
However, some of the samples taken from newborns for the purposes of genetic disease screening are saved and given to medical researchers. This has some privacy rights advocates up in arms.
Why should you care if someone has access to your DNA? The information encoded in your DNA contains the most intimate health secrets about you, and it can easily be used by unscrupulous individuals against you. For example, your propensity for many diseases can be determined from your DNA (indeed, that’s what this screening program is all about). Many privacy rights advocates are concerned that if this information fell into the wrong hands, it would affect a person’s ability to get health insurance (and by extension, employment). Though that sounds like a paranoid rant, it has already happened. In fact, it happens a lot.
A 1992 NIH study found “Stigmatization, and denial of services or entitlements to individuals who have a genetic diagnosis but who are asymptomatic or who will never become significantly impaired.” People have been denied health insurance not because they show the symptoms of a disease, but because their genetic code shows that they might someday manifest symptoms of that disease. It is important to note that security procedures in place make it extremely difficult (as close to impossible as any real-life situation can ever be) for an insurance company to gain access to a person’s genetic samples in this particular case- the samples are supposed to be completely de-identified from the people they came from. We’re talking about bloodspots in a fridge with no name, birthday, or identifying number. The program is HIPAA compliant.
No one’s consent is sought when their baby’s DNA is stored- in fact, people usually aren’t even informed. However, researchers have made many important and potentially life-saving discoveries from these samples.
I believe that while saving lives at the expense of someone’s privacy rights may be something that people will agree to, doing it without asking permission is completely unacceptable from a research ethics standpoint.
Just to be perfectly clear, I support genetic disease screenings of newborns because it saves lives. My objection is to using genetic material left over from these health screenings for other research without the consent of the patient.
And now we get to the ethical debate.
Am I being overly paranoid?
Do you think that it is ok for scientists to use someone’s genetic material without asking their permission (keeping in mind that their research saves lives)?
Would you provide consent for your DNA to be used in such a study?
I am not interested in the current laws and regulations concerning informed consent. I am interested in what you think is right and wrong.