Special Issue "Precision Medicine, Law & Disability"

A special issue of Laws (ISSN 2075-471X).

Deadline for manuscript submissions: closed (30 March 2016).

Special Issue Editor

Guest Editor
Dr. Maya Sabatello E-Mail
Division of Law, Ethics, and Psychiatry, Center for Research on Ethical, Legal, and Social Implications of Psychiatric, Neurologic, and Behavioral Genetics, Department of Psychiatry, Columbia University Medical Center, 1051 Riverside Drive, Unit 122, New York, NY 10032, USA
Interests: bioethics; disability; human rights; law and society; assisted reproductive technologies; ethical, legal and social implications of genetics

Special Issue Information

Dear Colleagues,

Emerging precision medicine initiatives in the US, the UK, and other economically developed countries raise many hopes. These initiatives aim to construct large-scale genetic and health information databases and rely on human genome sequencing and powerful data analysis technologies to advance research on disease risk assessment, understanding of disease mechanisms, prediction of optimal therapy, and development of pharmacogenomics to enable the provision of drugs that are tailored to individuals’ genetic makeup. There is a growing body of literature that considers the challenges arising from precision medicine initiatives to participants, but the implications of such programs on persons with disabilities are not well studied. The aim of this Issue is to consider the interplay between law, medical ethics, disability rights, and precision medicine programs.

One set of challenges arises from the ambiguity of the envisioned scope of precision medicine programs and its relationship with impairments and disability laws. What breadth of health and disease knowledge is to be generated in precision medicine initiatives, and how does it relate to impairments? Is remedying a disease (e.g., cancer) through genetic tailoring and pharmacogenomics equivalent to remedying impairment (e.g., Down Syndrome, a psychiatric disorder)? Which types of impairments are comparable, which ones are not, how should such categorical decisions be made, and as a matter of policy, what is the impact of such decisions on the socio-legal constructions of disability rights? One goal of this Issue is to assist in delineating and analyzing the tensions arising from precision medicine programs as a realm of medicine that aims at fixing human “abnormality” and emerging national and international disability laws that shift away from a medical- to a socially-based approach to disability and require respect for mental and physical differences.

Another set of questions concerns the relationship between genomics and disability rights. The Convention on the Rights of Persons with Disabilities (CRPD) is pivotal for the latter in its requirements of equality, inclusion, and provision of supports that are necessary to ensure full participation of persons with disabilities in society; however, it does not raise genomics and genetic data in its provisions. Other relevant international instruments such as the Universal Declaration on the Human Genome and Human Rights and the International Declaration on Human Genetic Data have all been adopted prior to the CRPD, and how genomic-based policies and programs are to be implemented from a disability rights perspective are understudied. To what extent are precision medicine programs accessible and tuned to the needs of persons with a range of disabilities? How can policies facilitate the representative recruitment and active participation of persons with disabilities in precision medicine programs? How will informed consent be obtained, and how does it relate to the CRPD’s requirement that guardianships are abolished and supported decision-making processes are enforced? And to what extent are precision medicine initiatives accountable and transparent to ensure that the data collected are accessed and used for purposes that are conducive to advance disability equality and inclusion? Contributions to this Issue will consider how national and international instruments pertaining to disability and genomics can inform the implementation of one another, and guide the development of precision medicine programs that are in line with disability rights from the start.

Finally, the intersection between disability and precision medicine programs raises a host of other questions about laws pertaining to personhood, privacy protection, ownership of body parts, and broader issues of justice. What are the implications of precision medicine programs (including gene editing and gene therapy before and after birth) for the legal, social, and philosophical constructions of personhood? To what extent does the view of participants as disembodied genetic datasets reinforce the historical conceptualization of persons with disabilities as objects, and how should national and international laws respond? As the knowledge of “disabling” genes and related epigenetic mechanisms may be relevant to other family members, are genomic privacy and decision to participate in precision medicine programs individual or communal? And what sort of social reciprocity exists for participation of persons with disabilities across age, gender, race/ethnicity, and other socio-economic divides in precision medicine programs, i.e., what is a “just” compensation for participation, what measures can address the multiple levels of marginality that some persons with disaiblities experience, how are the possible risks and benefits to be balanced, and, more generally, to what extent and under what conditions, can precision medicine programs curb health and social inequality of persons with disabilities?

This is an opportunity for law, disability, bioethicists, and public health scholars to reflect on the ethical, legal, and social implications of precision medicine initiatives to persons with disabilities and the international effort to promote disability rights whilst these initiatives are developing.

Dr. Maya Sabatello
Guest Editor

Manuscript Submission Information

Manuscripts should be submitted online at www.mdpi.com by registering and logging in to this website. Once you are registered, click here to go to the submission form. Manuscripts can be submitted until the deadline. All papers will be peer-reviewed. Accepted papers will be published continuously in the journal (as soon as accepted) and will be listed together on the special issue website. Research articles, review articles as well as short communications are invited. For planned papers, a title and short abstract (about 100 words) can be sent to the Editorial Office for announcement on this website.

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Keywords

  • Interplay between law, medical ethics, disability rights, and precision medicine programs
  • Ethical, legal, and social implications (ELSI) of genetics
  • Informed consent and legal capacity
  • Medical and social approaches to disability
  • Genetic personhood
  • Genomic privacy
  • Genomics and property law
  • Health and social justice
  • Accord and discord in national and international laws

Published Papers (4 papers)

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Research

Open AccessArticle
Liberal or Conservative? Genetic Rhetoric, Disability, and Human Species Modification
Laws 2016, 5(4), 41; https://doi.org/10.3390/laws5040041 - 03 Nov 2016
Abstract
A certain political rhetoric is implicit and sometimes explicit in the advocacy of human genetic modification (indicating here both the enhancement and the prevention of disability). The main claim is that it belongs to a liberal tradition. From a perspective supplied by the [...] Read more.
A certain political rhetoric is implicit and sometimes explicit in the advocacy of human genetic modification (indicating here both the enhancement and the prevention of disability). The main claim is that it belongs to a liberal tradition. From a perspective supplied by the history and philosophy of science rather than by ethics, the content of that claim is examined to see if such a self-description is justified. The techniques are analyzed by which apparently liberal arguments get to be presented as “reasonable” in a juridical sense that draws on theories of law and rhetoric. Full article
(This article belongs to the Special Issue Precision Medicine, Law & Disability)
Open AccessArticle
The Discussions around Precision Genetic Engineering: Role of and Impact on Disabled People
Laws 2016, 5(3), 37; https://doi.org/10.3390/laws5030037 - 09 Sep 2016
Cited by 6
Abstract
Genetic researchers are advancing in their abilities to extract precise genetic information from biological and human entities bringing genetic research steps closer to accurately modifying genes of biological entities, including that of humans. In this analytical essay, we focus on the discussions about [...] Read more.
Genetic researchers are advancing in their abilities to extract precise genetic information from biological and human entities bringing genetic research steps closer to accurately modifying genes of biological entities, including that of humans. In this analytical essay, we focus on the discussions about precision genetic intervention that have taken place since March 2015 as they pertain to disabled people. We focus on two areas; one being the role of disabled people in the recent gene editing discussions and the second being the utility of existing legal instruments. Within our first focus we address the following questions: (a) What is the visibility of disabled people in the gene-editing discussions that have taken place since March 2015? (b) What has been the impact of those discussions on disabled people? (c) Were social problems which disabled people face taken into account in those discussions; (d) How does the reality of engagement with disabled people in these discussions fit with science, technology and innovation governance discourses that ask for more stakeholder, bottom up and anticipatory involvement? Within our second focus we address the following questions: (a) What is the utility of the United Nations Convention on the Right of Persons with Disabilities (UNCRPD); and (b) What is the utility of existing legal instruments covering genetic interventions: for preventing negative social consequences of genetic engineering developments for disabled people. We argue that (a) the genetic engineering debates since March 2015 have portrayed disabled people dominantly through a medical lens; (b) that the governance of science, technology and innovation of genetic engineering including anticipatory governance and responsible innovation discourses has not yet engaged with the social impact of gene editing on disabled people; (c) that few scholars that focus on the social situation of disabled people are visible in the governance discussions of gene editing; and (d) that the utility of the UNCRPD and the investigated genetic-related legal instruments and international agreements to protect disabled people from negative consequences coming out of the gene editing discussions is unclear at the least. Full article
(This article belongs to the Special Issue Precision Medicine, Law & Disability)
Open AccessArticle
Precision Medicine and Advancing Genetic Technologies—Disability and Human Rights Perspectives
Laws 2016, 5(3), 36; https://doi.org/10.3390/laws5030036 - 30 Aug 2016
Cited by 4
Abstract
Scientific and technological developments are propelling genetics and genetic technologies into the public sphere. Scientific and technological innovation is becoming more refined, resulting in an increase in the availability and use of genetic testing, and other cutting edge genetic technologies, including gene editing. [...] Read more.
Scientific and technological developments are propelling genetics and genetic technologies into the public sphere. Scientific and technological innovation is becoming more refined, resulting in an increase in the availability and use of genetic testing, and other cutting edge genetic technologies, including gene editing. These genetic advances not only signal a growing trend towards precision medicine, but also provoke consideration of the protection of genetic information as an emerging human rights concern. Particular ethical and legal issues arise from a disability perspective, including the potential for discrimination and privacy violations. In consideration of the intersection of genetics and disability, this article highlights the significant concerns raised as genetic science and technology advances, and the consequences for disability rights, particularly the core concepts of non-discrimination, and respect for diversity and difference. On examining international human rights perspectives, it looks particularly at the UN Convention on the Rights of Persons with Disabilities and how it may be used to guide best practice in this area. With an acknowledgement of historical abuses of genetic science, this article highlights the need to maintain caution as to the potential consequences of advancing genetic technologies on persons with disabilities and indeed on society as a whole. Full article
(This article belongs to the Special Issue Precision Medicine, Law & Disability)
Open AccessArticle
CRISPR, a Crossroads in Genetic Intervention: Pitting the Right to Health against the Right to Disability
Laws 2016, 5(1), 5; https://doi.org/10.3390/laws5010005 - 18 Feb 2016
Cited by 3
Abstract
Reproductive genetic technologies (RGTs), including gene-editing technology, are being discovered and refined at an exponential pace. One gene-editing innovation that demands our swift attention is CRISPR/Cas9, a system of clustered regularly interspaced short palindromic repeats and a protein called Cas9. As CRISPR and [...] Read more.
Reproductive genetic technologies (RGTs), including gene-editing technology, are being discovered and refined at an exponential pace. One gene-editing innovation that demands our swift attention is CRISPR/Cas9, a system of clustered regularly interspaced short palindromic repeats and a protein called Cas9. As CRISPR and other RGTs continue being developed, we must remain vigilant concerning the potential implications of genetic-engineering technology on our interpersonal and legal relationships. In the face of increasingly numerous and refined RGTs, we must maintain the rights of everyone: potential parents, prospective children, and individuals (both living and prospective) with disabilities. For those who wish to become parents, how should procreation be regulated in light of developing RGTs, especially gene-editing technology? What duties do parents owe their children, and when does such a duty attach? What role should RGTs play in parents’ fulfillment of their duties to their children? This article will contextualize the right to health and what I will term the “right to disability” in the CRISPR/Cas9 landscape. The article will then explore these rights in reference to the “subjunctive-threshold” interpretation of harm. Finally, I will argue that RGTs must be thoughtfully regulated, with such regulations taking into account the opinions of geneticists, bioethicists, and lay people concerning both the right to health and the right to disability. Full article
(This article belongs to the Special Issue Precision Medicine, Law & Disability)
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