ABSTRACT
Discussions and debates about the governance of human germline and heritable genome editing should be informed by a clear and accurate understanding of the global policy landscape. This policy survey of 106 countries yields significant new data. A large majority of countries (96 out of 106) surveyed have policy documents-legislation, regulations, guidelines, codes, and international treaties-relevant to the use of genome editing to modify early-stage human embryos, gametes, or their precursor cells. Most of these 96 countries do not have policies that specifically address the use of genetically modified in vitro embryos in laboratory research (germline genome editing); of those that do, 23 prohibit this research and 11 explicitly permit it. Seventy-five of the 96 countries prohibit the use of genetically modified in vitro embryos to initiate a pregnancy (heritable genome editing). Five of these 75 countries provide exceptions to their prohibitions. No country explicitly permits heritable human genome editing. These data contrast markedly with previously reported findings.
Subject(s)
CRISPR-Cas Systems , Embryo Research/legislation & jurisprudence , Gene Editing/legislation & jurisprudence , Genome, Human , Germ Cells , Embryonic Stem Cells , HumansABSTRACT
The raging controversy about whether heritable genome editing should be permitted is shaped and structured by the prevailing and countervailing narratives in circulation. In recent years, considerable shortcomings have come to characterize this discourse; it is now time to identify and correct a number of serious misunderstandings and distortions that have taken hold. This essay begins by briefly evaluating reactions to the November 2018 announcement that gene-edited babies had been born; it asserts that widespread agreement about the researcher's recklessness and dire ethical violations concealed deep fault lines among participants in the heritable genome editing debate. It goes on to consider several key omissions and misrepresentations that distort public understanding and undermine genuine debate. It suggests that the conversation must be refocused away from technical, medical, and scientific considerations toward matters of societal meanings, values, context, and consequences. It concludes with criteria for a broadly inclusive and meaningful decision-making process about whether heritable genome editing has any place in the shared and just future to which we aspire.
Subject(s)
Clustered Regularly Interspaced Short Palindromic Repeats , Gene Editing/ethics , Public Opinion , Embryo Research , Female , Genome, Human , Humans , Infant , Reproductive Techniques, Assisted , United Kingdom , United StatesABSTRACT
As public interest advocates, policy experts, bioethicists, and scientists, we call for a course correction in public discussions about heritable human genome editing. Clarifying misrepresentations, centering societal consequences and concerns, and fostering public empowerment will support robust, global public engagement and meaningful deliberation about altering the genes of future generations.
Subject(s)
Gene Editing/ethics , Genome, Human/genetics , Bioethical Issues , Embryo, Mammalian , Germ Cells , HumansSubject(s)
CRISPR-Cas Systems , Gene Editing/ethics , Biotechnology/ethics , China , Female , Gene Editing/legislation & jurisprudence , Humans , Infant, Newborn , Pregnancy , UNESCO , United Kingdom , United StatesABSTRACT
The authors regret that the reference "Dickenson, 2012" was incomplete in the reference list. Full reference details are given below: Dickenson, D., 2012. Bioethics: All That Matters. Hodder Education, London. The authors would like to apologise for any inconvenience caused.
ABSTRACT
The terminology used to discuss third-party reproduction, as with other new biomedical processes, can ease or impede communication and even influence behaviour. In an effort to sensitize analysts and stakeholders to variations in terminology and to facilitate communication on issues arising from international surrogacy arrangements, this paper examines variations in terms used. We introduce some of the issues previously raised by scholars concerned with analysis of discourse related to third-party reproduction. We then survey the terms used in English-language discussions to denote specific actors, including 'surrogates,' 'intended parents,' gamete providers and children, as well as terms used to describe 'surrogacy arrangements.' We conclude with a discussion on navigating and negotiating the use of these various and value-laden terms.
