Designer babies not most urgent concern of genetic medicine
Now is the time to have open and society wide conversations about how gene editing should be moving forward
Recently, an international team of scientists successfully corrected a disease-causing gene in human embryos, using a “gene editing” technique called CRISPR. This has led to much excitement about the prospects of curing debilitating diseases in entire family lineages.
At the same time, the possibility of changing embryos’ genes has renewed fear about “designer babies.” The hype in both directions should be tempered by the fact that a lot more work will need to be done to improve the technique’s safety and efficacy before it can be applied in the clinic.
And because a lot of diseases, as well as other physical and behavioural characteristics, are controlled by the complex interaction of many genes with each other and with the environment, in many cases simple genetic “fixes” may never be possible.
But while the technology is still in early stages, now is the time to have open and society wide conversations about how gene editing should be moving forward — and genetic medicine more broadly, including the use of advanced genetic testing and sequencing to diagnose disease, personalize medical treatments, screening babies, etc.
We must raise broad awareness of the health benefits as well as the personal, social and ethical implications of genetics.
In the U.S., affordability and insurance coverage strongly influence access to genetic medicine. In Canada, the reality of strapped budgets means access is far from equal either. But our public health-care system means it is at least conceivable that these technologies will eventually be available to a higher proportion of people who need them.
For example, OHIP currently pays for genetic testing and counselling for a number of diseases, such as BRCA testing for breast and ovarian cancer, for patients who satisfy certain eligibility criteria.
Crucially, to ensure that the largest possible cross section of society will benefit from, and not be harmed by, advances in genetic technologies, these conversations must include the voices of all communities.
This is especially true for those who may harbour deep distrust of the biomedical establishment. In the U.S., for much of the 20th century, the eugenics movement had resulted in a range of sterilization programs, discriminatory policies and scientific abuses (such as the infamous Tuskegee syphilis trials) that disproportionately targeted the poor and, especially, racial minorities such as African Americans.
While the eugenics movement might have been less established in Canada, where it did occur (e.g., the sterilization program in Alberta or the “Indian hospitals” in B.C.) it had most heavily affected Indigenous communities. In both countries, this shameful history has led to lower trust and usage of the health-care system by the affected communities.
As genetic medicine advances, many scientists and health researchers are pointing out the importance of having the diversity of human populations represented in genetic studies in order to gain medical insights that can benefit everyone. If we fail to fully engage these under-represented communities and ensure that genetics is not just another way to exploit and discriminate against them, then we risk worsening this historical and ongoing injustice.
New genetic technologies, such as gene editing, also bring issues of disability rights into sharper focus. While “designer babies” may not be an immediate concern, even the possibility of selecting and changing our offspring’s characteristics raises thorny questions.
For example, what conditions count as medically necessarily to “treat” — how about deafness, dwarfism, autism, or intersex conditions? Ultimately, it is about what kinds of people get to live, and who gets to make those decisions. Many disability rights advocates (e.g., the Down syndrome community) are already voicing concerns about what these emerging technologies mean for how their communities are seen and valued today.
We must make sure that the conversations around genetics are not only about generalized notions of safety or effectiveness, or concerns of “playing God.” These conversations must also encompass questions of access and justice, and acknowledge that the benefits and harms of genetic technologies are not distributed equally.
This is a task that will involve concerted efforts from scientists, funders and industry, to build trust with these communities and to genuinely listen and respond to their concerns.
The ability to understand and, perhaps one day, change our genetics has huge potential to improve human well-being. Let’s make sure that everyone will enjoy these benefits, and that no communities are left behind, or worse yet, harmed in the process. Johnny Kung is the director of new initiatives for the Personal Genetics Education Project (pged.org) at Harvard Medical School’s Department of Genetics.