Giving up on gene therapy is wrong reaction

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It will take months if not years before these questions about who knew what when to get answered. Lawyers will have a fine old time running the meter while they battle out who is to blame and what is to be paid for the death of Jolee Mohr.

Lost in all of this mess are three key points.

First, there is no excuse — none — for someone to be allowed to sign up for a study of an experimental drug or treatment never before used in human beings if they don’t clearly understand when the sole aim of such a study is to see whether the drug or treatment is safe. If people cannot really understand complex 15-page consent forms, then why are those documents still being used?

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Second, if research is to advance, including gene therapy but also embryonic stem cell research and other novel therapies, then someone has to go first after all the animal testing and lab work has been done. Those first subjects face very real risks, including death. But there is nothing anyone can do to completely eliminate those risks.

Third, there is no national insurance program for those injured in early-stage research studies, meaning bereaved families may have to go through the rigmarole of a costly and slow trial so that they can pay their medical bills when a loved one dies or is severely injured in this type of medical research. Since those willing to be in safety studies are really helping future patients, don’t we owe it to them to help in the rare case where something unexpectedly goes terribly wrong?

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And lastly, questions remain about the system we have had in place for decades to protect human subjects in research. Subjects have to give informed consent, and committees, known as institutional review boards, have to sign off on the research and the consent forms before a study can start. But in a world where drug companies sponsor more and more research approved by for-profit review committees and carried out locally by private doctors who can make a lot of money recruiting subjects these protections may not be enough.

Jolee Mohr’s death is a horrible tragedy. It should not, however, end research on gene therapy, which may be the only way to treat a variety of ailments and diseases. That death should, however, cause us to reexamine whether we are adequately protecting the heroes who help medicine make progress.

Arthur Caplan, Ph.D., is director of the Center for Bioethics at the University of Pennsylvania.

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