Thu, Dec 06, 2018 page9

• Gene editing claims spark debate on ethics of embryo research

  • By Jasper Bovenberg and Bartha Knoppers
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  A Chinese scientist’s claims to have created the world’s first genetically edited babies have injected a new sense of urgency into the discussions about ethics, and social and personal responsibility surrounding the capacity to create and genetically modify human embryos.

  New technologies such as genome “base editing” have even raised the specter of widespread “embryo farming,” prompting calls for a re-evaluation of how embryo research is regulated.

  These issues generate impassioned debate, and to determine right and wrong, the toughest decisions are typically delegated to research ethics committees.

  Because these review boards are empowered to rule on the creation, modification and termination of life, their decisionmaking processes should satisfy fundamental criteria of justice, including due process, public input and personal accountability.

  However, at the moment this standard is not being met.

  In legal theory, justice comprises two components: substantive justice, which concerns a law’s content and the fairness of its application, and natural or procedural justice, which concerns the fairness and transparency of how decisions are made.

  In terms of substantive justice, most research ethics protocols are sound; research on human embryos is heavily restricted or banned in most countries.

  “Germline” gene editing — genetic alterations of human embryos and gametes that are passed on to future generations — is not sanctioned under international law and the overwhelming majority of countries that have considered legalizing it have eventually rejected the idea.

  However, when it comes to natural justice — and in particular, the frameworks guiding decisions — the record is decidedly mixed.

  For example, the WHO’s standards for ethics review require only that committees be “independent.”

  Given what is at stake, we believe this guidance should go further and that research reviews should be strengthened.

  This will require three key reforms. First, bioethics review committees must respect due process standards. At a minimum, this means publicizing agendas in advance and ensuring that deliberations are conducted in accordance with the Universal Declaration of Human Rights, which defines a “fair” trial as a public hearing conducted by an independent and impartial arbiter.

  Moreover, verdicts must be explained clearly, published fully and subject to appeal.

  Second, to be legitimate and accountable, the work of research ethics committees must be informed by a diversity of views. Most international frameworks covering embryo research call for engagement with the public to establish a broad societal consensus.

  While achieving this level of involvement is not always easy, the legal system has a solution that dates to the early days of Roman law: the amicus curiae, or “friend of the court.”

  The purpose of the amicus curiae is to improve the quality and legitimacy of the judicial process. To that end, friends of the court — people who are not party to a case, but have an interest in how it is decided — can either submit expert advice or act as a special-interest advocate.

  Various national and international courts, including the US Supreme Court and the European Court of Human Rights, invite public input in the form of amicus curiae briefs.

  We propose that a similar process be established for research ethics committees considering work with human embryos.

  This would give the public an opportunity to share knowledge, perspectives, and interests related to how decisions might affect individuals and society as a whole, not to mention the human embryos themselves.

  An amicus-type brief could be particularly relevant to bioethics cases, given that most review boards are dominated by technical experts and do not always represent public opinion.

  Finally, technocratic committees must never supplant societal or personal responsibility for sensitive issues involving life and death; ethical obligations cannot be offloaded so easily.

  As the World Medical Association’s Declaration of Helsinki says, “the responsibility for the protection of research subjects must always rest with the physician or other healthcare professional and never the research subjects” themselves.

  One way to instill individual responsibility would be in the form of a personal declaration.

  For example, to ensure transparency, scientific journals require authors to declare conflicts of interest.

  Likewise, the EU’s regulations for clinical trials require that research proposals include a discussion of ethical implications.

  Why should a scientist proposing research on human embryos — or, for that matter, the funders and publishers of that research — be held to a lower standard?

  Moral and ethical liability for science in general, and embryo research in particular, should never be outsourced.

  On the contrary, it is a weight that must be borne as transparently, inclusively, and judiciously as possible.

  Jasper Bovenberg, an attorney at law, is the founder of Legal Pathways Institute for Health and Bio-Law in the Netherlands. BarthaKnoppers is director of the Center of Genomics and Policy at McGill University in Canada.

  Copyright: Project Syndicate

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