The Human Right to Science and the Regulation of Human Germline Engineering

Boggio, Andrea; Knoppers, Bartha Maria; Almqvist, Jessica; Romano, C.

doi:10.1089/crispr.2018.0053

Cited by 13 publications

(8 citation statements)

References 20 publications

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“…41 They also built upon previously acknowledged rights, including the right to enjoy the benefits of scientific progress, 42 which has been recently reaffirmed. 43 While there are seven criteria in the HRIA (see Box 1), here we touch on a few of its priorities: (1) whether the proposed innovation or policy is well targeted; (2) whether it is the least restrictive/intrusive (in case of GGE) way to intervene; and (3) what the human rights burden may be.…”

Section: Where Do We Go From Here? a Hriamentioning

confidence: 99%

Societal and Ethical Impacts of Germline Genome Editing: How Can We Secure Human Rights?

et al. 2019

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Genome editing has opened up the possibility of heritable alteration of the human germline. The potential of this powerful tool has spurred a call for establishing robust regulatory frameworks to outline permissible uses of genome editing and to map a rational and ethical course. In response, major national scientific bodies and international organizations have convened and released comprehensive reports outlining recommendations for ethical regulatory frameworks. Significantly, these include an emphasis on public participation and the development of principles to guide future applications of genome editing. While essential, public input and principles are not sufficient to ensure ethical uses of this technology. We propose an approach that relies not only on agreed-upon principles and a democratic process but requires a Human Rights Impact Assessment to evaluate the potential burdens that such biomedical interventions may place on human rights.

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Section: Where Do We Go From Here? a Hriamentioning

confidence: 99%

Societal and Ethical Impacts of Germline Genome Editing: How Can We Secure Human Rights?

et al. 2019

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“…We have focused on both the promotion of the right to science and the right to the highest attainable health. These rights provide a legally actionable focus and represent common, internationally agreed on values that can in turn help guide the development of national regulatory approaches 19. Thus, human rights may provide a more universal and legitimate foundation on which the governance of ‘serious’, ‘health’ and ‘disease’, as well as HGGM can be built.…”

Section: Discussionmentioning

confidence: 99%

“…Thus, human rights may provide a more universal and legitimate foundation on which the governance of ‘serious’, ‘health’ and ‘disease’, as well as HGGM can be built. As suggested by Boggio et al ,19 this would offer ‘an ideal starting point for building international consensus on governing principles that promote responsible scientific and technological advancements’.…”

Section: Discussionmentioning

confidence: 99%

“…Our focus is on how a human rights-based framework (eg, right to science and right to health) could integrate the concepts of objectivism and constructivism to provide guidance for a more actionable consideration of ‘serious’. Indeed, we would argue that a human rights framework, by way of its legally binding nature (for States having ratified the international treaties) and its globally accepted norms/values, provides a more universal foundation for discussions of the ethical, legal and social implications of emerging or disruptive technologies 19…”

Section: Introductionmentioning

confidence: 99%

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The ‘serious’ factor in germline modification

2019

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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 what genetic diseases should be targeted by these technologies. Yet, this notion remains vague and poorly defined, rendering its application challenging and decision making subjective and arbitrary. By way of background, we begin by briefly presenting two conceptual approaches to ‘health’ and ‘disease’: objectivism (ie, based on biological facts) and constructivism (ie, based on human values). The basic challenge under both is sorting out whether and to what extent social and environmental factors have a role in helping to define what qualifies as a ‘serious’ disease beyond the medical criteria. We then focus on how a human rights framework (eg, right to science and right to the highest attainable health) could integrate the concepts of objectivism and constructivism so as to provide guidance for a more actionable consideration of ‘serious’. Ultimately, it could be argued that a human rights framework, by way of its legally binding nature and its globally accepted norms and values, provides a more universal foundation for discussions of the ethical, legal and social implications of emerging or disruptive technologies.

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“…As Kalsi purports, ‘subsequent advances to ethics and the dissemination of these advances across cultures, creeds, and political systems’ are integral to this right 2. While beyond this paper, the right to science itself includes the freedom of scientific research, access to scientific knowledge (data sharing) and to its benefits 14 15…”

Section: Responsementioning

confidence: 99%

‘Serious’ factor—a relevant starting point for further debate: a response

2019

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In this reply, we wish to defend our original position and address several of the points raised by two excellent responses. The first response (De Miguel Beriain) questions the relevance of the notion of ‘serious’ within the context of human germline genome modification (HGGM). We argue that the ‘serious’ factor is relevant and that there is a need for medical and social lenses to delineate the limits of acceptability and initial permissible applications of HGGM. In this way, ‘serious’ acts as a starting point for further discussions and debates on the acceptability of the potential clinical translation of HGGM. Therefore, there is a pressing need to clarify its scope, from a regulatory perspective, so as to prevent individuals from using HGGM for non-therapeutic or enhancement purposes. The second response (Kalsi) criticizes the narrow interpretation of the objectivist approach and the apparent bias towards material innovations when discussing the right to benefit from scientific advancements. As an in-depth discussion of the objectivist and constructivist approaches was beyond the scope of our original paper, we chose to focus on one specific objectivist account, one which focuses on biological and scientific facts. We agree, however, with the critique that material innovations should not be the sole focus of the right to benefit from scientific advancements, which also incorporates freedom of scientific research and access to scientific knowledge scientific freedom and knowledge, including the influence of these on ethical thinking and cultures.

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The Human Right to Science and the Regulation of Human Germline Engineering

Cited by 13 publications

References 20 publications

Societal and Ethical Impacts of Germline Genome Editing: How Can We Secure Human Rights?

Societal and Ethical Impacts of Germline Genome Editing: How Can We Secure Human Rights?

The ‘serious’ factor in germline modification

‘Serious’ factor—a relevant starting point for further debate: a response

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