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Letter for WHO committee on human germline engineering, in response to [the July 2019 call for contributions](https://www.who.int/ethics/topics/human-genome-editing/call-for-contribution/en/).
Announcement: <https://twitter.com/kanzure/status/1155903004853358594>
To whom it may concern,
We would like to offer a perspective on the positive aspects of human germline engineering efforts. We are particularly interested in the question of how to maximize the beneficial use of this technology while also minimizing disadvantages. We call for a proactive standards-based approach to fostering both commercial and non-commercial technology developments in this space. In particular, we are calling for a governance framework of certification based on reasonable, empirically-studied criteria, within which our primary recommendation is a rigorous focus on quality control.
Our background may be somewhat unusual, and we hope our perspective is helpful to the committee. In February 2019, MIT Technology Review revealed our commercial human germline genetic engineering project in public for the first time. This was shortly after the revelations of Jiankui He in November 2018. Our project, which is an independent, privately-funded project not originating from an academic group, had been in progress for more than a year at that point.
What we are calling for is a proactive approach to fostering and analyzing human gene editing research and development. An international moratorium will never work, as we have seen with nuclear proliferation, or prohibition of drugs and alcohol. It would serve only to drive development underground until only the ultra wealthy can reach it, and to locales that care less about safety, increasing risks and limiting availability. People’s greatest concern about germline editing is that it will be available only to the ultra-wealthy, and the best counter to that dystopian future is to be open and rational.
Humans have always strived to provide a better life for their children and themselves; this is a universal principle across cultures. It has been accomplished both socially and technologically, though the latter makes far more of an impact today. Whether a parent encourages their child to eat healthily, or enhances their genome to prevent heart disease and cancer, is a matter of degree.
The potential benefits from editing the human genome are vast. Eliminating common diseases, slowing aging, and enhancing capability are all possible. Adult gene therapy, comparable to what is achievable by germline editing, is perhaps decades away; and there are no other viable alternatives. Consider the trillions of dollars in healthcare savings possible, or the positive effects of even a small increase in intelligence among the population willing to make that choice. There are many well-researched mutations that can make a substantial positive impact on a child’s life.
Obviously, initial attempts (such as those by Jiankui He) are primitive, and deserving of some scorn, if only because the methods used are not a viable path toward substantial utility in human genetic editing. But there is near-term potential to allow much greater changes to the human genome. Regardless of actions taken by supranational committees, advancement in this field will occur. What we implore is that it be developed in the open, if not encouraged then at least tolerated.
If human genetic editing does happen (and it will), those truly concerned with safety and the welfare of potential children conceived with it must admit that the best approach is to foster research and development of its use, with an intense focus on quality control. Developing a safe and effective technique is the surest way to prevent potential mistakes, and encouraging an honest dialogue (rather than fear mongering) is the best way to ensure genetically modified humans are accepted by humanity with the grace and dignity that all people deserve.
It is up to individuals and parents to decide whether to make changes to the germline, and doing so should always be voluntary. Government restriction of human reproductive freedoms has been tried in the past in the form of eugenics, and it has left a sour taste in everyone's mouth.
Please don’t let us repeat the mistakes and irrational fears of the past. Nuclear power, which could have obviated the bulk of today’s climate catastrophe. Genetically modified foods, which could allow us to feed tens of billions.
We remain hopeful for the future and are optimistic that professionals will see reason regarding the massive benefits of this technology, and that they will guide if not advise the public in these matters with the calmness and respect becoming of the sciences and their profession. All progress has risks, but with a strong emphasis on safety, informed consent, and providing a better life for generations to come, human gene editing has untold positive potential.
Our recommendation to the committee is to call for open discussion of these benefits and reaching these goals; a conference where relevant experts from all fields (scientific, ethical, and regulatory) can meet to discuss the techniques of human genetic editing, and to draft a framework under which it can move forward in a manner which is accessible to the general public.
Respectfully,
Bryan Bishop <kanzure@gmail.com>
and
Max Berry <maxberry@gmail.com>
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