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Human germline genome editing is illegal in Canada, but could it be desirable for some members of the rare disease community?

Published in Journal of Community Genetics
· DOI :10.1007/s12687-019-00430-x
Erika Kleiderman5
Estimated H-index: 5
(McGill University),
Ian Stedman (York University)
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Abstract
Human germline genome editing may prove to be especially poignant for members of the rare disease community, many of whom are diagnosed with monogenic diseases. This community lacks broad representation in the literature surrounding genome editing, notably in Canada, yet is likely to be directly affected by eventual clinical applications of this technology. Although not generalizable, the literature does offer some commonalities regarding the experiences of rare disease patients. This manuscript seeks to contribute to the search for broader societal dialogue surrounding human germline genome editing by exploring some of those commonalities that comfort the notion that CRISPR may hold promise or be desirable for some members of this community. We first explore the legal and policy context surrounding germline genome editing, focusing closely on Canada, then provide an overview of the common challenges experienced by members of the rare disease community, and finally assess the opportunities of germline genome editing vis-a-vis rare disease as we advocate for the need to more actively engage with the community in our search for public engagement.
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Published on Jul 20, 2019in Journal of Medical Ethics2.19
Erika Kleiderman5
Estimated H-index: 5
(McGill University),
Vardit Ravitsky14
Estimated H-index: 14
(UdeM: Université de Montréal),
Bartha Maria Knoppers49
Estimated H-index: 49
(McGill University)
Current advances in assisted reproductive technologies aim to promote the health and well-being of future children. They offer the possibility to select embryos with the greatest potential of being born healthy (eg, preimplantation genetic testing) and may someday correct faulty genes responsible for heritable diseases in the embryo (eg, human germline genome modification (HGGM)). Most laws and policy statements surrounding HGGM refer to the notion of ‘serious’ as a core criterion in determining...
Published on Jul 10, 2019in Frontiers of Medicine in China
Tania Bubela2
Estimated H-index: 2
(SFU: Simon Fraser University),
Erika Kleiderman5
Estimated H-index: 5
(McGill University)
+ 4 AuthorsBartha Maria Knoppers49
Estimated H-index: 49
(McGill University)
Canada’s Assisted Human Reproduction Act is long overdue for Parliamentary review. We argue that the current regulation of research using human reproductive materials is not proportionate, not responsive to the uncertain threats posed to human and environmental health and safety, and is not considerate of diverse values in a democratic society. We propose tailored regulatory carve-outs for in vitro research for currently prohibited activities, such as gene editing, and for the exercise of Minist...
Published on Jun 1, 2019
Andrea Boggio5
Estimated H-index: 5
(Bryant University),
Bartha Maria Knoppers49
Estimated H-index: 49
(McGill University)
+ 1 AuthorsCesare P.R. Romano9
Estimated H-index: 9
(LMU: Loyola Marymount University)
Abstract There is currently no international consensus on how human germline engineering should be regulated. Existing national legislation fails to provide the governance framework necessary to re...
Published on Mar 7, 2019in The New England Journal of Medicine70.67
Lisa Rosenbaum18
Estimated H-index: 18
The Future of Gene Editing The news that Chinese scientist He Jiankui had attempted to edit the CCR5 gene in the germline of two embryos led to a swift backlash in the scientific community. But the...
Published on Jan 28, 2019in Canadian Medical Association Journal6.94
Bartha Maria Knoppers49
Estimated H-index: 49
(McGill University),
Erika Kleiderman5
Estimated H-index: 5
(McGill University)
KEY POINTS The response to the announcement in China on Nov. 25, 2018, of the “first clustered regularly interspaced short palindromic repeats [CRISPR] babies”[1][1] is reminiscent of that surrounding the 1978 birth by in vitro fertilization of Louise Brown, the “first test-tube baby.” Will
Published on Jan 1, 2019in Nature43.07
J. Benjamin Hurlbut5
Estimated H-index: 5
The scientific community’s response to the CRISPR twins should not pre-empt broader discussion across society, warns J. Benjamin Hurlbut. The scientific community’s response to the CRISPR twins should not pre-empt broader discussion across society, warns J. Benjamin Hurlbut.
Published on Dec 1, 2018
T JuengstEric (UNC: University of North Carolina at Chapel Hill), E HendersonGail (UNC: University of North Carolina at Chapel Hill)+ 7 AuthorsCadiganR. Jean (UNC: University of North Carolina at Chapel Hill)
Abstract New gene-editing tools challenge conventional policy proscriptions of research aimed at either human germline gene editing or human enhancement by potentially lowering technical barriers t...
Published on Dec 1, 2018in Orphanet Journal of Rare Diseases3.69
Danielle Whicher1
Estimated H-index: 1
(New York Academy of Medicine),
Sarah Philbin1
Estimated H-index: 1
(Patient-Centered Outcomes Research Institute),
Naomi Aronson24
Estimated H-index: 24
(Blue Cross Blue Shield Association)
About 30 million individuals in the United States are living with a rare disease, which by definition have a prevalence of 200,000 or fewer cases in the United States ([National Organization for Rare Disorders], [About NORD], [2016]). Disease heterogeneity and geographic dispersion add to the difficulty of completing robust studies in small populations. Improving the ability to conduct research on rare diseases would have a significant impact on population health. The purpose of this paper is to...
Published on Nov 1, 2018in Molecular Genetics & Genomic Medicine
Felicity K. Boardman10
Estimated H-index: 10
(Warw.: University of Warwick),
Rachel Hale5
Estimated H-index: 5
(Warw.: University of Warwick)
Background Genomic medicine is rapidly evolving, particularly in the domain of reproduction. Population carrier screening for a range of disorders is becoming possible using whole genome/exome sequencing. However, very little is known about the views of genetically disabled adults toward selective reproduction. Methods Forty‐three in‐depth qualitative interviews were carried out with adults living with different types of genetic condition, recruited through support groups and clinics. Interviews...
Published on Jun 1, 2018in Medicine Health Care and Philosophy1.45
Giulia Cavaliere4
Estimated H-index: 4
('KCL': King's College London)
This paper explores the ethics of introducing genome-editing technologies as a new reproductive option. In particular, it focuses on whether genome editing can be considered a morally valuable alternative to preimplantation genetic diagnosis (PGD). Two arguments against the use of genome editing in reproduction are analysed, namely safety concerns and germline modification. These arguments are then contrasted with arguments in favour of genome editing, in particular with the argument of the chil...