Examining Genetics/Genomics and Technology from a Human Rights Perspective Bonnie Holaday PhD, RN, FAAN

Introduction The right to enjoy the benefits of scientific progress and its applications received little attention from the human rights and scientific community until recently.

Human Rights Documents Several human rights documents define the right to enjoy the benefits of scientific progress. The Universal Declaration of Human Rights recognizes the right of everyone to “share in scientific advancement and its benefits”. (1948)

Human Rights Documents The International Covenant on Economic, Social and Cultural Rights (ICESCR), Article 15 (1966) 1.The States Parties to the present Covenant recognize the right of everyone: (a) To take part in cultural life

ICESCR (b) To enjoy the benefits of scientific progress and its applications (c) To benefit from the protection of the moral and material interests resulting from any scientific, literary or artistic production of which he is the author.

ICESCR 2.Shall take the steps necessary for the conservation, the development and the diffusion of science and culture. 3.Undertake to respect the freedom indispensable for scientific research and creative activity. 4.Recognize the benefits to be derived from encouragement and development on international contacts and co-operation in the scientific and cultural fields.

Human Rights Documents Declaration on the Use of Scientific and Technological Progress in the Interests of Peace and for the Benefit of all Mankind (1975) Universal Declaration on the Human Genome and Human Rights (1997)

Human Rights Documents UNESCO-International Declaration on Human Genetic Data (2003) UNESCO-Universal Declaration on Bioethics and Human Rights (2005) UNESCO-Venice Statement on the Right to Enjoy the Benefits of Scientific Progress and its Applications (2009)

Human Rights Documents The term “science” has not been defined for the purposes of human rights, and the need to do so was noted in the Venice Statement, (11.7).

Human Rights Documents Farida Shaheed, Special Rapporteur on Cultural Rights, noted the “benefits from science encompass not only scientific results and outcomes but also the scientific process, its methodologies and tools” (2012, paras 22,24). – The right to enjoy the benefits of scientific progress and its applications. 14 May 2012, Geneva.

My Interests My research and scholarly interests are focused on the scientific knowledge and technological advancements associated with genetics/genomics as interpreted through a human rights lens. I have an interest in:

My Interests 1.A right to access to the beneficial genetics/genomics scientific and technological developments. 2.A right to choice and participation in determining priorities and in making decisions about the use of these developments.

My Interests 3. A right to be protected from possible harmful effects of genetics/genomics scientific and technological development, on both individual and collective levels.

My Interests-Benefit Sharing Economic globalization and increasing privatization and commercialization of genetic science has made it difficult to achieve the intent of the documents listed, esp. Article 15 of the ICESCR. Commercialization has introduced market considerations into the conduct of science.

My Research The concept of benefit sharing intersects the areas of law, ethics, research, political philosophy and human rights. The first step in the research was a concept analysis of “benefit sharing”.

My Research The second step is to conduct a policy Delphi study to bring together stakeholders with opposing views to facilitate consensus as well as to identify divergence of opinion. The policy Delphi is a multistage process involving the initial measurement of opinions (stage 1), followed by data analysis, design of a new questionnaire based on group response to the previous questions, and a second measurement of opinion (stage 2).

My Research Potential participants include: physicians, nurses, genetic counselors, scientists/researchers, lawyers, biotech experts, pharmaceutical company representatives, ethicists/human rights, legislators, and citizens.

Disability and Genetics Consider the following: A blood test costing less than $1000 will yield the 3.1 billion DNA base-pair sequence of an individual’s entire genome (whole genome sequencing-WGS). WGS can also be done prenatally. Whole exome sequencing provides information about all of the protein coding genes in a genome.

Disability and Genetics We can genetically modify human eggs and embryos using mitochondrial manipulation and other technologies. We can replace defective mitochondria in a human egg. For people with a disability the message is, “It is better not to exist than to have a disability”.

My Research From a human rights perspective a number of issues could be addressed. My current focus is on children. Specifically prenatal testing and diagnosis, gene therapy or other genetic intervention, and the right of the child to an identity.

My Research Some questions to consider: 1.From a human rights perspective what are our obligations with respect to persons who have not yet, and may not ever, come into existence. 2.Should we set a threshold of a minimally acceptable life as one in which the child has a reasonable prospect of enjoying a good number of the rights outlined in the Convention on the Rights of the Child?

My Research 3.Does a parent harm a child by allowing it to be born with a disability? 4.If we allow genetic medicine to select against severe impairments will it lead to a lower tolerance of minor variations, and ultimately to the rejection of any deviation from the phenotypic norm (or phenotypic ideal) if genetic enhancements are permitted?

My Research 5. Does genetic modification alter a child’s identity? (The question of identity of human beings should be clearly distinguished from the question of the beginning of life of the person.)