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
Saudi Arabian largesse is flooding Egypt’s cultural scene, but the reception is mixed. Some welcome new “cooperation” between two regional powerhouses, while others fear a hostile takeover by Riyadh. In Cairo, historically the cultural capital of the Arab world, Egyptian Minister of Culture Nevine al-Kilany recently hosted Saudi Arabian General Entertainment Authority chairman Turki al-Sheikh. The deep-pocketed al-Sheikh has emerged as a Medici-like patron for Egypt’s cultural elite, courted by Cairo’s top talent to produce a slew of forthcoming films. A new three-way agreement between al-Sheikh, Kilany and United Media Services — a multi-media conglomerate linked to state intelligence that owns much of
The US and other countries should take concrete steps to confront the threats from Beijing to avoid war, US Representative Mario Diaz-Balart said in an interview with Voice of America on March 13. The US should use “every diplomatic economic tool at our disposal to treat China as what it is... to avoid war,” Diaz-Balart said. Giving an example of what the US could do, he said that it has to be more aggressive in its military sales to Taiwan. Actions by cross-party US lawmakers in the past few years such as meeting with Taiwanese officials in Washington and Taipei, and
The Republic of China (ROC) on Taiwan has no official diplomatic allies in the EU. With the exception of the Vatican, it has no official allies in Europe at all. This does not prevent the ROC — Taiwan — from having close relations with EU member states and other European countries. The exact nature of the relationship does bear revisiting, if only to clarify what is a very complicated and sensitive idea, the details of which leave considerable room for misunderstanding, misrepresentation and disagreement. Only this week, President Tsai Ing-wen (蔡英文) received members of the European Parliament’s Delegation for Relations
Denmark’s “one China” policy more and more resembles Beijing’s “one China” principle. At least, this is how things appear. In recent interactions with the Danish state, such as applying for residency permits, a Taiwanese’s nationality would be listed as “China.” That designation occurs for a Taiwanese student coming to Denmark or a Danish citizen arriving in Denmark with, for example, their Taiwanese partner. Details of this were published on Sunday in an article in the Danish daily Berlingske written by Alexander Sjoberg and Tobias Reinwald. The pretext for this new practice is that Denmark does not recognize Taiwan as a state under