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Germline Engineering and Human Rights

  • R. Alta Charo (a1)
  • Please note a correction has been issued for this article.
Extract

With the ever-increasing range of medical technologies at our disposal to mediate the processes of life, from conception to death, comes an ever-increasing number of decision points about human control of fate. And as we debate altering our fate—whether dictated by a deity or by chance—the discussion frequently devolves into a question of whether we may alter not only our own fate, but also that of our children. The advent of genome editing, whether by older methods or the newer, often more easily used methods employing CRISPR, has only made debating the controversial possibility of heritable “germline” editing more urgent. The advent of genome editing, whether by older methods or the newer, often more easily used methods employing CRISPR, has only made debating the controversial possibility of heritable “germline” editing more urgent. On the eve of the Second International Summit on Human Genome Editing, held at the end of November 2018 in Hong Kong, a startling and disturbing story began circulating - a Chinese researcher announced the first births of children whose genomes had been edited at the embryonic stage. The work (assuming the claim can be verified) suffered from myriad problems, beginning with the lack of a compelling medical need, and including inadequate preclinical research, lack of peer review, flawed subject recruitment and consent procedures, and an apparent disregard for both formal and informal rules governing genetic manipulation of embryos. The summit's organizing committee issued a statement, distinguishing this experiment from what would be a responsible translational pathway forward. But not surprisingly, others around the world immediately called for a global, enforceable prohibition on such genetic engineering. On the occasion of the Universal Declaration on Human Rights (UDHR)’s seventieth anniversary, this essay argues that the current human rights law on germline editing misunderstands both the mechanisms of genetics and the moral basis for human rights, suggesting a more nuanced approach as we move forward and keep pace with new gene-editing technologies.

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Copyright
This is an Open Access article, distributed under the terms of the Creative Commons Attribution licence (http://creativecommons.org/licenses/by/4.0/), which permits unrestricted re-use, distribution, and reproduction in any medium, provided the original work is properly cited.
References
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1 Marilyn Marchione, Chinese researcher claims first gene-edited babies, AP Wire (Nov. 26, 2018).

2 Andrew Joseph and Sharon Begley, China halts genome editing research that led to claimed birth of CRISPR babies, Stat News (Nov. 29, 2018).

4 It is also commonly referred to as “gene editing,” though genome editing is the more comprehensive term.

5 Most commonly this is in reference to DNA found in the nucleus of the cell, but it could also be used to edit the DNA in the mitochondria.

7 Id., art. 13 (emphasis added).

8 Nat'l Acad. of Sci., Eng'g, & Med., Human Genome Editing: Science, Ethics and Governance (2017).

9 Nuffield Council on Bioethics, Genome Editing and Human Reproduction (July 2018).

10 Id.

11 Joel Feinberg, The Child's Right to an Open Future, in Whose Child? (William Aiken & Hugh LaFollette eds.,1980); Joel Feinberg, Freedom and Fulfillment 76-97 (1992).

12 Ruth Macklin, Dignity is a Useless Concept, 327 British Med. J. 1419-20 (2003).

13 The Committee on Psychosocial Aspects of Child and Family Health, Committee on Early Childhood, Adoption, and Dependent Care, and Section on Developmental and Behavioral Pediatrics, The Lifelong Effects of Early Childhood Adversity and Toxic Stress, 129 Pediatrics 232 (Dec. 2011).

14 Nat'l Acad. of Sci., Eng'g, & Med., supra note 5; Nuffield Council on Bioethics, supra note 6.

15 Hong Ma et al., Correction of a Pathogenic Gene Mutation in Human Embryos 548 Nature 413 (2017); Dieter Egli et al., Inter-Homologue Repair in Fertilized Human Eggs?, 560 Nature E5 (Aug. 8, 2018).

17 In IVF, eggs are fertilized in a laboratory and grown until ready for transfer to a woman who will gestate them until birth.

19 Another less frequent use is to select only embryos that will produce a child of a particularly desired sex, which the Oviedo Convention would prohibit.

20 David Quammen, The Scientist Who Scrambled Darwin's Tree of Life, N.Y. Times (Aug. 13, 2018).

21 Viviane Slon et al., The Genome of the Offspring of a Neanderthal Mother and a Denisovan Father, 561 Nature (Aug. 22, 2018).

22 Humanity +, About Humanity +.

24 Margaret Riley, CRISPR Creations and Human Rights, 11 L. & Eth. Hum. Rights 225 (2017).

25 Peter Mills, Genome Editing, Human Rights and the ‘Posthuman’, Nuffield Council on Bioethics (2017).

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