Recently, Professor Robert Bohrer spoke at two conferences on the topic of gene therapy. The first, in Phoenix at the Arizona State University Conference on the Governance of Emerging Technologies and the second to the American Society for Law Medicine and Ethics Annual Health Law Professors Conference in Cleveland.
In these presentations, Bohrer, who specializes in the legal and ethical issues raised by developments in biotechnology and pharmaceutical policy, was revisiting an area that he first addressed 25 years ago. In 1992 he published an article in Futures, an international multidisciplinary journal, titled Future Fall-out from the Genetic Revolution, in which he discussed future challenges posed by gene therapy.
Fast forward to 2018, Bohrer feels that the issues surrounding gene therapy have not changed and neither has his analysis. “What has changed,” says Bohrer, “is that, at long last, gene therapy is a reality and finally developing quickly.”
The theory of gene therapy is that if you could get a good copy of the gene to function correctly inside the disease itself and replace the missing or incorrect function of the diseased or mutated gene, then this would go a long way toward treating or correcting the disease itself.
Gene therapy, however, is not without controversy. Not least of which is in the difference between treating future generations now using germ line gene therapy, which alters the actual DNA of the cell, or restricting treatment to using somatic cell therapy which treats the cells without changing the reproductive qualities and therefore doesn't affect future generations.
“Some people are very concerned about playing God and altering the future,” says Bohrer. “Just as in 1992, they are concerned about the blurring line between enhancement and therapy, and somatic cell and germ line therapy.”
Countering this objection, Bohrer believes today there is a lot more ability to know very specifically all of the things that a gene does. He cites the example of the breast cancer one and two gene mutations which greatly increase a woman's chance of breast or ovarian cancer. He says that we would not be playing God by making sure that future generations were at a lesser risk of breast cancers.
“In terms of pure ethical reasoning it’s good to have a precautionary principle,” says Bohrer. “That is if we don't know what the real effects are we shouldn’t mess around with the future, but to the extent that we do know what the future effects are there's no reason not to eliminate serious diseases that are inheritable.”
Today, gene therapy is being used to treat inherited retinal disease which causes blindness, and within the next few years, it could potentially treat a wide range of diseases, such as cancer, cystic fibrosis, heart disease, diabetes, hemophilia, and AIDS.
“The call that I really come out with here,” concludes Bohrer, “is the notion that the sooner we can start to come to a consensus about the needs of the least genetically advantaged, and agree that we need to help those people and make sure that everyone has fair access to the most needed technology, the better off we’ll be.”
Read Professor Bohrer’s full Futures article here: https://www.sciencedirect.com/science/article/pii/001632879290076R