The Complicated Ethics of Gene Editing

Jack Crosbie
JULY 20, 2018
gene editing dilemma,healthcare gene editing,crispr ethics,hca news

A few times a month, Johnny Kung, Ph.D., and his colleagues sit down with groups of people to tell them about all the different ways they could have been born. Kung works for Harvard University’s Personal Genetics Education Project (pgEd), an outreach group that talks to classrooms, churches and healthcare professionals about the potential of gene-editing technology — and about the ethical dilemmas it presents.

When Kung approaches a class, he can’t shy away from the transformative, and possibly transgressive, nature of his field. Gene editing could give doctors the ability to change the building blocks of human life, overhauling everything from our susceptibility to diseases to our physical strength and stamina. It promises cures for cancer, hereditary disease and any number of genetic flaws that cause hardships. But like our bodies, the world is an imperfect place, and some groups think altering our fundamental code is problematic, for many reasons.

>> READ: Handling the Headaches of At-Home Genetic Testing

Our understanding of the human genome, and what editing it might produce, remains far from complete, and opponents worry that beginning to change it will have unforeseen and disastrous side effects. Others worry that creating a system in which humans can enhance themselves will further societal divides between the haves and have-nots, allowing only the rich to change their genes and futures.  

Kung accepts this. But he also realizes that personal genetics are only going to play a larger role in personal health and society in the future — and the only way to maximize their potential and minimize their pitfalls is to empower the public to make thoughtful, informed decisions. Techniques like CRISPR/Cas9, short for clustered regularly interspaced short palindromic repeats, and chimeric antigen receptor T-cell (CAR T) therapy are still in their infancy but have already shown groundbreaking results in animal and human trials. As these innovations develop, healthcare providers must learn how to counsel patients, navigating the ethical intricacies of changing the human body among different groups, races and religions.

“For many of the communities we engage with, genetics is so closely tied to questions of health, identity, autonomy and privacy, informed consent and history,” Kung says. “We believe that having these difficult conversations early and frankly is important for our audience to be informed.”

Epigenetics’ Unethical History

Kung says his team’s goal is to “spark conversations about what ways these communities can ensure that current research in these areas can lead to benefits for their communities while preventing the negative history from repeating.” Usually, Kung goes into a classroom or a community center with a short lecture, orienting people to the basics of what gene editing is. After some PowerPoint slides, he likes to pose different scenarios or ethical dilemmas to the group and have them sort themselves into smaller groups based on their stance. This helps them solidify arguments and process why they hold their own views and why others might feel differently. Trying to decide the future of the human race can get thorny, and for many historically marginalized groups, the scientific advancements have often come at the expense of violence to their communities. Many communities just don’t trust scientists who promise miracles.

In 1932, the U.S. Public Health Service performed a nonconsensual study on hundreds of black syphilis patients in the South, using them as a control population to examine the effects of the disease without treatment. The patients were not told they had syphilis or about the nature of the experiment.

In 2016, Kung met with a group of black pastors in Baltimore for a conference co-organized by the Minority Coalition for Precision Medicine and the Health Ministries Network to discuss religious and cultural objections to gene editing. Kung had high hopes for the meeting, and more than 100 prominent clergy had signed up to attend. But when the date arrived, after the conference was postponed during protests over a court’s decision to drop charges for the officers indicted in the killing of Baltimore resident Freddie Gray, only a handful of clergy showed up. Kung asked why.

“One of the pastors who was in attendance told us bluntly that, to many of them, Harvard [where the pgEd is based] carries the same connotations as their local medical powerhouse, Johns Hopkins — a history of mistrust, the story of Henrietta Lacks,” Kung says.

Much of modern cancer treatment stems from the cell line of Lacks, a black woman whose biopsied cancerous cells were immortalized by doctors at Johns Hopkins in 1951. Lacks never consented to the procedure nor received any compensation for the invaluable research that resulted from her genetic material. Though her body has saved countless lives and changed the way we understand humanity’s most dangerous disease, she was effectively used as a laboratory specimen by doctors entrusted with her care. Lacks, the Tuskegee experiment and a long legacy of eugenics in the U.S. disproportionately targeting minorities have all left an indelible legacy in many communities, felt today in an entire demographic’s trepidation toward researchers who promise new cures.

Citing the history of eugenics, critics of gene editing warn that editing of individual human embryos could quickly become a tool of oppression. They fear that bad faith actors wielding complete control of the human genome could carry out genocide or systematic oppression on an unprecedented scale.

Even in a best-case scenario, the ability to edit embryos, like many other modern reproductive practices, would be reserved for those fortunate enough to afford it. This concern isn’t new — in the ’90s, when cloning first entered the scientific dialogue, Princeton microbiologist Lee Silver warned that specialized genetic selection could quickly widen the gap between rich and poor. In his book “Remaking Eden: Cloning and Beyond in the Brave New World,” Silver explained that privileged classes would have the resources and ability to edit out undesirable traits at will.

Marcy Darnovsky, executive director of the Center for Genetics and Society and one of the most outspoken critics of gene editing of most forms, says that CRISPR technology and other epigenetic procedures could quickly make Silver’s dystopia possible.

>> READ: Forensic Genealogy Is Neat. Is It Ethical, Though?

This fear is particularly pronounced in one specific kind of epigenetics, a process called germline editing. Germline gene editing changes the genetic makeup of something while it is still in embryo, ensuring that the resultant life form will pass on those changes to their own offspring. In humans, germline editing immediately changes a person’s genome, and thus their life, before they are a conscious being capable of consent or awareness of what’s happening. With a germline change, doctors or scientists could, for example, eliminate the chance that a baby would be born with Huntington’s disease or another hereditary condition. But the fear is that things go further: that genetic treatments become an expensive luxury that one class of people can afford so that all children born to the wealthy will be stronger, taller, smarter and healthier than those who cannot afford treatments.

“This kind of thing could take us to some very ugly places,” Darnovsky says. “We already tolerate pretty huge levels of inequality and unfairness in this society that we have. And I think that to try to add to that, exacerbate that, just seems wrong.”

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