The Complicated Ethics of Gene Editing

Jack Crosbie
JULY 20, 2018
gene editing controversial,healthcare trust,ethics medicine,ethics problem crispr,healthcare analytics news

For doctors and scientists working on genetic treatments for disease, Sternberg explained that there’s an ethical difference between exposing a living patient to the risk of a procedure going wrong and exposing a future person to an unforeseen host of effects. A living patient may consent to a CRISPR treatment, knowing there’s a chance they’ll contract cancer, because they think it will give them the best shot at life. But an embryo and future offspring can’t consent to having their genetic code completely altered.

Fortunately, in our current medical system, germline editing is largely unnecessary to treat medical conditions.

“I think it’s going to be very rare that you’ll have medical needs that would justify germline editing,” Sternberg says. Instead, major companies pursuing CRISPR technologies on a clinical, commercial level — CRISPR Therapeutics, Editas Medicine and Intellia Therapeutics — will “completely avoid the germline issue,” Sternberg adds, bypassing the difficult ethics of modifying embryos to focus on somatic-editing therapies to treat medical conditions in living patients.

The solution to this, and to some of the more ideological critiques of gene editing, Sternberg says, is to treat gene editing as any other medical procedure.

>> READ: Lost in the CRISPR Hype, a Gene-Editing Giant Is Fighting Back

“I think it’s often mentioned in this way as being a very profound thing,” Sternberg notes. “I don’t actually see intervention at the genetic level as something we should do any more or less seriously than intervention at a surgical level or in a way that might modify the genome of certain cells. The question is, can some intervention address medical needs? Can it be offered in an equitable, socially responsible way, and are there any safety concerns that may be intended or unintended that we need to address?”

And right now, somatic gene editing shows great potential to help. Novartis’ groundbreaking CAR T cancer treatment, Kymriah, has already met Food and Drug Administration approval, and doctors and hospital administrators are starting to include it in their budget analyses. A single dose of the treatment is $475,000, which means the cost-benefit analysis for administrators is going to be heavily driven by how effective it really is — something we won’t know until it’s been used many, many more times.

How the Healthcare Industry Can Adapt

What focusing on somatic, clinical applications of gene-editing technology doesn’t solve, however, is the social ethics component of the conversation. The applications for CRISPR tech are varied, from a cure to cancer to enhanced muscle tone. As the medical science community gains further understanding of the human genome, more solutions will present themselves and more cures will become available. Darnovsky worries that gene editing will become like cosmetic surgery, which was first proposed as a treatment for patients with disfiguring wounds but then became a luxury for those who could afford it. Except gene editing could create differences even more drastic than those of personal appearance — it could weed out diseases, improve life expectancies and change bodies. Those who will miss out on these advancements are the populations of people the existing medical system in the U.S. often overlooks: the uninsured or underinsured, the poor, ethnic minorities and rural populations living far from well-equipped, metropolitan healthcare networks.

Sternberg mentioned the case of sickle cell anemia, a chronic genetic condition that predominantly affects African-Americans. Sickle cell is virtually incurable, but there are treatments that have improved the life expectancy for many affected patients. And yet hydroxyurea, the most effective treatment for sickle cell, is drastically underused by doctors, and many patients in the developing world have no access to it at all.

“If that isn’t available today, then what is going to be the landscape with a new, highly priced drug named CRISPR that’s even more difficult for most of these people to access or pay for?” Sternberg asks. “None of that excitement [about CRISPR] addresses these underlying problems with access and insurance.”

Sickle cell is one of many diseases that CRISPR (combined with stem cell therapies) has the potential to cure, but Sternberg points out that its mere existence doesn’t guarantee the tech will get to where it needs to go.

Kung covered this on the second day of his meeting with church leaders last year. He was invited back to one of the pastors’ churches to speak more about the coming revolution of personal genetics. The pastors told Kung to focus on the technology’s potential to deliver patients from suffering rather than its comparisons to “playing God.” In Tuskegee, with Henrietta Lacks, researchers were playing God, with unwitting subjects unable to consent. With gene editing, that possibility is on the table, particularly if the technology is deployed in a way that only some have the means to use it.

Speaking to the pastors, Kung says, “showed us how wide the gap is between the biomedical research community and some of the communities it’s supposed to serve. And how much work still needs to be done to narrow this gap.”

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