The Ethics Committee of the Catholic Medical Association (CMA) and the National Catholic Bioethics Center (NCBC) have jointly produced a very well-written document regarding genetic engineering of human embryos. Their comments reflect a more authentic, Christian morality in evaluating such procedures and their associated research. Such a public stance from a Christian perspective is very welcome and sorely needed.
The CMA and NCBC document is not, however, ideal. Further recommendations are outlined below.
Dated September 27, 2019, the document is titled “Final Responses Submitted to the Public Call for Evidence from the International Commission on the Clinical Use of Human Germline Genome Editing.”
That Commission has given itself the task of “identifying the scientific, medical, and ethical requirements to consider when assessing potential clinical applications of human germline genome editing — if society concludes that heritable human genome editing applications are acceptable.” The Commission is led by the U.S. National Academy of Medicine, the U.S. National Academy of Sciences, and the Royal Society of the United Kingdom, with participation by other scientific and medical associations.
Given this Commission’s overwhelmingly secular and technical bias in evaluating germline editing (engineering the heritable DNA of embryos), it was crucial that the CMA and NCBC weigh in with a more spiritually wise response.
Here are the guidelines for human germline editing (HGE) put forward in the “Response”:
- HGE “should only be ordered to serious, life-threatening diseases.”
- HGE should “focus on point mutations or easily identifiable short sequence mutations that improve outcomes to a proportionate degree.”
- Therapies and research must “not involve harm to, or destruction of, any human subjects, especially human embryos and fetuses, to ensure that members of this vulnerable segment of the human population are not terminated or otherwise instrumentalized.”
- “This means that direct embryonic creation through in vitro fertilization or extra-corporeal embryo creation must not be employed at any point in the process.”
- “Prior to any human attempts, multiple generations of healthy offspring of animals and non-human primates carrying a similar genetic defect, would have to be tracked after the introduction of genome edits, with verification of the absence of ‘off target,’ mosaic-type mutations, and other complications or unanticipated side-effects.”
- “A National and/or International Registry would need to be instituted that would oversee and regulate such activities in order to track current and foreseeable future generations of persons undergoing germline genome editing, to identify and catalogue untoward effects and future unanticipated outcomes.”
- “Such Registries/oversight bodies should be comprised of scientists, governmental regulators, ethicists, theologians, religious representatives, and disease advocacy groups. Special care must be taken with respect to composition of these entities to avoid over-representation of researchers and commercial groups standing to profit from the promulgation of the technology. Moreover, voices that are likely to speak contrary to the will of researchers, universities, and commercial interests, especially voices from the Catholic Church, must not be excluded as tends to occur when scientists seek to forcibly gain control over the ethical discourse and assure favorable or pre-determined outcomes. All proceedings of such oversight bodies must be publicly available, and closed-door, back-room sessions and decision-making must be explicitly disallowed.”
- “There should be strict licensure and regulation of clinics and laboratories performing such activities.”
- “In terms of consent, standard requirements for patient consent would have to be followed. This means that proxy consent could be sought from parents when treatments for under-age children were being considered. Parents can never grant valid informed consent for research experimentation upon, or destructive utilization of, their embryonic children.”
- “Genome editing which bio-enhances otherwise healthy humans should be banned. … Not doing so and allowing for bio-enhancements has the potential to generate two classes of human beings: natural and bio-enhanced, leading to potential unjust and conflictual societal stratification.”
- “As a practical matter currently, germline genome editing of the gestating or born human employing present-day technologies should not be pursued.”
It is highly encouraging that this “Response” declares opposition to the use of HGE for non-therapeutic purposes, i.e. enhancing human capabilities and features without a medical purpose. The international scientific societies emphasize therapeutic purposes in their public communications but sidestep any clear statements on the ethical debate about non-therapeutic enhancements, reflecting the industry’s quiet interest in highly lucrative enhancement therapies in the future.
Destruction of embryos in the process (such as in the associated procedure of IVF) and in research is condemned. This makes it highly unlikely that HGE in its current form will ever be morally legitimate, since it relies on IVF and destructive research on human embryos.
Three cheers for the CMA and NCBC for calling out the secular scientific associations that claim authority in developing ethical guidelines but systematically exclude theologians and Christian bioethicists from their debates.
Here are some recommendations for future such communications:
- The criteria put forward by this “Response” make it extremely unlikely that the practice of HGE will ever be conducted in a truly moral way. That should be stated clearly along with a call for a permanent moratorium on related research and therapies until the scientific community catches up with authentic moral principles, if it ever does.
- The argument against using HGE for non-therapeutic enhancement needs to be explained better and expressed in a more nuanced manner. Is genetic enhancement at the embryonic stage always wrong in itself? Would it be wrong if the science was developed far enough to minimize safety concerns for the embryo and if concerns about societal justice, discrimination, and inequality were addressed? The lack of answers to these questions leaves secular scientists confused about the Catholic position and increases the odds that the Church will be simply ignored.
- The bylaws and structural characteristics of the International Commission and various scientific and medical associations make it impossible for theologians and Christian bioethicists to play a serious role in ethical deliberations. The Commission and similar efforts at imposing “ethical” guidelines should be declared illegitimate. The NCBC and CMA should be joining with other religious organizations and citizen groups to demand an alternate structure for international debate over HGE. This is no time for accommodation of structurally biased organizations and processes.
- The NCBC, CMA, and other Catholic entities should not be afraid to couch their communications in explicitly religious, moral, and virtues-based language. It must be clear to all that Christian morality is not subject to or merely one perspective on scientific professional ethics. A clear distinction of the Christian approach to HGE from the secular or atheistic approach will generate conflict over the fundamental criteria that are to be used in evaluating bioethical issues. That is exactly the kind of debate we want to have.
- In addition to the call for government and industry regulation, there should be an explicit call for Christian conversion among the scientific and medical communities. Only a reorientation of research and therapy toward enhancement of the dignity of human beings, acknowledged as children of God, can possibly turn these communities away from widespread engagement in HGE therapies in the near future. The rhetorical emphasis should move away from secular justice and toward Christian charity.
Many thanks to the NCBC and CMA for their strong response to this International Commission’s request for public input. We must pray in earnest that their voices will reach those in the wilderness who are prepared to hear.
Christopher M. Reilly
October 3, 2019