Another Gene Therapy Death?

As I searched the internet for bioethics articles, I came across an article claiming that human immortality would be a possibility in 20 years and another which claimed that the human brain would be replicated within 10 years. I was formulating a plan to attack the ethics of converting myself into an ironman of sorts when I came across a much more serious article by the renowned Arthur Caplan.

Caplan’s article is a defense of gene therapy in light of Jolee Mohr’s sudden death during a gene therapy trial. While the article raises the routine question about the possible benefits weighed against the risks in this trial, I was struck by the informed consent piece of the article. Mohr’s husband “says his wife did not understand that she had agreed to be in a safety study of gene therapy, which was not intended to benefit her in any way” but she had signed a 15 page informed consent form. Caplan, later in the article, questions whether the consent forms should be so complex.

In gene therapy studies it is imperative that the patient knows exactly what they are getting themselves into. Therefore, rather than having scientific-ridden, intricate novels detailing an experiment for patients to comprehend, there should be simplified forms which give an overview which informs without being overbearing. One might argue that the physician should just explain the trial to the patient but when doctors are making money for recruiting patients into the study they could go to any lengths to convince their patients to take part in the study. In addition, many of these research trials are being approved by for-profit boards, making it easier for ethically questionable and higher risk trials to get through.

Though it isn’t clear if Mohr’s normal arthritis drug HUMIRA or the gene therapy trial is to blame for her death the main point of the article is to emphasis the need to better protect trial participants. When people volunteer to participate in trials for the betterment of humanity it is essential that they be protected from all unnecessary risks. Ethics boards should be diligent and physicians should not be paid for recruiting their patients into research trials. While gene therapy is a worthy investment moving forward, the focus on monetary gains must take a backseat to the health of the patients which should easily surpass the other factors as the number one priority.

Relevant site:
http://www.bioethics.net/articles.php?viewCat=2&articleId=202