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
There is a modern roadway stretching from central Hargeisa, the capital of Somaliland in the Horn of Africa, to the partially recognized state’s Egal International Airport. Emblazoned on a gold plaque marking the road’s inauguration in July last year, just below the flags of Somaliland and the Republic of China (ROC), is the road’s official name: “Taiwan Avenue.” The first phase of construction of the upgraded road, with new sidewalks and a modern drainage system to reduce flooding, was 70 percent funded by Taipei, which contributed US$1.85 million. That is a relatively modest sum for the effect on international perception, and
At the end of last year, a diplomatic development with consequences reaching well beyond the regional level emerged. Israeli Prime Minister Benjamin Netanyahu declared Israel’s recognition of Somaliland as a sovereign state, paving the way for political, economic and strategic cooperation with the African nation. The diplomatic breakthrough yields, above all, substantial and tangible benefits for the two countries, enhancing Somaliland’s international posture, with a state prepared to champion its bid for broader legitimacy. With Israel’s support, Somaliland might also benefit from the expertise of Israeli companies in fields such as mineral exploration and water management, as underscored by Israeli Minister of
When former president Tsai Ing-wen (蔡英文) first took office in 2016, she set ambitious goals for remaking the energy mix in Taiwan. At the core of this effort was a significant expansion of the percentage of renewable energy generated to keep pace with growing domestic and global demands to reduce emissions. This effort met with broad bipartisan support as all three major parties placed expanding renewable energy at the center of their energy platforms. However, over the past several years partisanship has become a major headwind in realizing a set of energy goals that all three parties profess to want. Tsai
On Sunday, elite free solo climber Alex Honnold — famous worldwide for scaling sheer rock faces without ropes — climbed Taipei 101, once the world’s tallest building and still the most recognizable symbol of Taiwan’s modern identity. Widespread media coverage not only promoted Taiwan, but also saw the Republic of China (ROC) flag fluttering beside the building, breaking through China’s political constraints on Taiwan. That visual impact did not happen by accident. Credit belongs to Taipei 101 chairwoman Janet Chia (賈永婕), who reportedly took the extra step of replacing surrounding flags with the ROC flag ahead of the climb. Just
RSS