Missing: ethics in our research
November 25th, 2018. A bombshell announcement by Dr He Jiankui of Southern University of Science and Technology in Shenzhen, China was that twin baby girls have been born using gene editing CRISPR technology. Dr He claimed that a gene CCR5 was removed so that the babies would be immune to HIV, cholera and smallpox. The announcement created global condemnation, and panic, among scientists and bioethicists. Dr He was first under house arrest and subsequently removed from his post by the Chinese authorities who said that he did this for his own fame and fortune. There is a strong reason to believe that a number of high-profile US scientists knew about these highly controversial experiments and now there is even evidence that Dr He may have had support from the Chinese government for his research, the same government that distanced itself from the troubled experiment quickly. Ethical implications of gene editing in humans are astronomical. Tinkering human genome, or creating designer humans should be off-limits — at all times, in all places.
But over the last four months, since this issue came to light — I have been wondering that if the CRISPR technology, to create gene-edited babies, was available to our researchers, what would they do? Would they exercise caution and think deeply about ethical implications, or would they do exactly what a researcher in Shenzhen did?
My hope is that our researchers would exercise caution but my inclination is that they would do exactly what Dr He did.
A story from about a decade ago can perhaps illustrate the point.
I remember about a decade ago, a colleague in Lahore was telling me and some of my colleagues that he intends to inject stem cells directly into some of patients to cure them of blindness. My jaw dropped! How could he do that? He said he had asked his chairperson, and the chairperson found no problem with it. And what about institutional approval? I asked. He had no idea what I was talking about. There was no need for any institutional approval. Fortunately for his patients, he was never able to get the necessary consumables and his interests moved elsewhere.
My worry about lack of ethics in research is based on three observations.
First — there is no training in bioethics for our researchers and clinicians. Our scientists, lab technicians, researchers or professors are not required to go through mandatory annual research ethics training. We somehow assume that good upbringing, modesty, and religious education takes care of all this. I wish it was as simple as this.
Second — the institutional framework for ethical review of research projects is missing in most institutions. I can count on my left hand, the number of institutions that have a rigorous formal ethical review process. For some, the ethical review board does exist, but only on paper. For most, it doesn’t even exist on paper. Without a proper institutional framework, and the power of the institutions to stop research without a really rigorous review, ethically compromised research will continue to take place.
Finally — the goal of ethics in research is simple. It is based on the fundamental principle of “do no harm”, and for that we need to recognise the basic value of life, of dignity and of equality. For as long as we continue to think of some people as expendable or inferior in any form, we will continue to subject them to practices that are immoral and unethical. And with regard to the last point, we all are guilty. We gladly hand out real or metaphorical certificates that demeans them — socially, morally, politically or in hollow virtues of patriotism. For as long as some will always be less equal than others, ethical research remains a pipedream.
The writer is a Howard Hughes Medical Institute professor of biomedical engineering, international health and medicine at Boston University. He tweets @mhzaman