Precision Medicine, Law & Disability

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

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• 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