Personalized Medicine: Great, but Some Really Serious Issues

Arthur L. Caplan, PhD


February 24, 2015

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I am Art Caplan from the Division of Medical Ethics at the New York University Langone Medical Center. Did you hear about the big announcement from the White House and President Obama? Precision medicine: The President has allocated a lot of money in his projected budget to advance the field of precision medicine.

Certainly, the idea is a good one. We all dream of a day when treatments and cures are targeted to our particular genetics, to each of our particular biologies. Who does not like individualized, precision medicine?

In fact, right now we may like it a bit too much. I fear that there is more marketing and promotion of the idea of personalized medicine and precision medicine than the reality of personalized medicine, or precision medicine, that we have. You travel down the highway and see signs that say, "Come here" or "Come there" for your cancer treatment or whatever it may be. "We have precision medicine." We have begun to see some new approaches that target particular tumors, but in general we do not have a wide variety of cures and interventions. Basically, we can say that this may work for you or this is less likely to work for you, but we do not have a storehouse full of individualized treatments.

Thus, I support the initiative that the President announced because we have to start moving our vast knowledge of genetics toward developing precision medicine. I worry, however, that our marketing of precision medicine is ahead of our ethical reach.

Time for Ethics to Catch Up

What are likely to be the big ethics problems? In the office, I believe people will come to demand precision, individualized medicine. They will have heard about it.

We need budgetary support for an educational effort to bring all physicians and their staff up to speed as to how to counsel people about precision medicine. When a patient says, "I have a risk for this disorder" or " I may have a higher risk for an adverse event from that," we need a prepared physician and staff who know what to say when they get these kinds of statements and questions.

People also will worry about privacy. If patients allow you to put all of their information and medical records online to try to link it up to DNA or genetic databases, will other people see or be aware of this information? We need to anonymize those records by using numbers and codes rather than names. I believe that younger people are not as concerned about privacy as older people are. Younger people are already sharing a lot of personal information on the social media sites. They talk about what they are doing, where they have been, who they are dating, what is going on, and they are well aware of the fact that sites get hacked and that people lose computers and flash drives.

It is tough to truly guarantee privacy. I am not saying that privacy is unimportant, but I believe that we have to be realistic about privacy issues and about what we tell our patients regarding how much privacy we can absolutely guarantee.

What to Do With What We Didn't Want to Know

Probably the biggest issue that may arise is learning things you do not want to know. Remember, precision medicine will not only tell us how to target a tumor; precision medicine will also tell us things that people did not ask about. These genetic tests may reveal that the person I thought was my father is not my father, because the genetics do not match up. Genetic tests may tell me that I have a risk factor for a particular problem or that I am a non-responder to a particular type of therapy. But that may also apply to my siblings and biological relatives. Do I tell them or not tell them?

What if we find out incidental things? The good news is that we have a highly personalized treatment to help with your diabetes. The bad news is that while we were looking, we found that you may be at great risk of developing Alzheimer disease or parkinsonism.

We have to understand how we will manage unwanted information, information that may affect others. Do we have a duty to ask our patients to disclose information to third parties? I think we certainly want to raise that as a possibility as we present these kinds of results. And what do we do when we just pick up incidental findings? If I were that patient and you found a treatment for a previously untreatable condition for me, even if you found the treatment 4 or 5 years later, I would like you to call me and tell me, "Hey, we have something now for your multiple sclerosis (or for your depression)." The look-backs and the idea that I should be contacted may outweigh worries about privacy or worries about confidentiality if a real benefit is to be had.

I am all for precision medicine. I believe that we ought to be ready as we begin to cash in our biological and genetic discoveries. When precision medicine becomes reality, I suspect that patients will want the benefits as much or more than protection from potential ethical risks.

I am Art Caplan at the NYU Langone Medical Center. Thanks for watching.


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