Genetic equity

Abstract

This paper proposes, elaborates and defends a principle of genetic equity. In doing so it articulates, explains and justifies what might be meant by the concept of 'human dignity' in a way that is clear, defensible and consistent with, but by no means the same as, the plethora of appeals to human dignity found in contemporary bioethics, and more particularly in international instruments on bioethics. We propose the following principle of genetic equity: humans are born equal; they are entitled to freedom from discrimination and equality of opportunity to flourish; genetic information may not be used to limit that equality.

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Acknowledgements

The authors acknowledge the support of a project grant from the European Commission for the project EUREKA under its Quality of Life and Management of Living Resources Programme, 2002. An important part of the impetus for this paper has come from the membership of both authors of the UK Human Genetics Commission (HGC). We thank all our colleagues on the commission for many helpful comments and suggestions but emphasize that the responsibility for this paper and for the ideas it contains is that of the authors and this paper does not necessarily represent the views nor the policy of HGC nor those of any other of its members. A version of the principle of genetic equity was originally proposed in an informal working paper by J.S., J.H. and Simona Giordano, called 'Genetic Equality' and submitted to the HGC. We thank two anonymous referees for helpful comments.

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The World Medical Association Declaration of Human Rights

Glossary

AFFIRMATIVE ACTION

The practice of counting features such as gender or skin colour affirmatively as a qualification for educational or employment opportunities to mitigate or help to eradicate the effects of discrimination.

COMMON-LAW RIGHTS

The rights that arise in common-law jurisdictions such as England and the United States, which are usually rights that are traditionally recognized by the courts (case law), as opposed, for example, to rights established by a parliament (statute law).

CONSEQUENTIALIST

A person who adheres broadly to the philosophical idea of consequentialism, which holds that actions are to be ethically evaluated in terms of their consequences, rather than in terms of the agent's intentions or some absolute standard.

CONTINGENT FEATURES

Features that are not necessary or logically entailed.

GENETIC EXCEPTIONALISM

The singling out of genetic criteria for special attention, often with the implication that it is inappropriate to do so.

GENE THERAPY

The introduction of an active gene into a patient to supply a missing function or to offset susceptibility to a disease.

KANTIAN ETHICS

In broad terms, the name given to a trend in ethics that follows the ethical approach of Immanuel Kant. In this context, it refers to the idea that people should be treated always as ends in themselves and never only as a means to the ends of others.

MORAL CLAIMS

Claims that people make on each other or society, the justification of which is ethical rather than legal or customary.

PHARMACOGENETICS

Pharmaceutical treatment that is tailored to the individual, with regard to genetic criteria — for example, by choice of drug or dosage.

REPRODUCTIVE CLONING

Cloning, either by nuclear substitution or by embryo splitting, resulting in a live birth. It occurs naturally in the case of identical twins.

STATUTORY ENTITLEMENTS

The rights established by statute or other acts of the legislature.

WORLD MEDICAL ASSOCIATION DECLARATION OF HELSINKI

A declaration of principles and standards for human-subject research that is widely accepted in the research community.

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Harris, J., Sulston, J. Genetic equity. Nat Rev Genet 5, 796–800 (2004). https://doi.org/10.1038/nrg1454

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