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Examining Genetics/Genomics and Technology from a Human Rights
Perspective Bonnie Holaday PhD, RN, FAAN
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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.
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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)
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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
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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.
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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.
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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)
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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)
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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).
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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.
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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:
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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.
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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.
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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.
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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.
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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).
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My Research Potential participants include: physicians, nurses,
genetic counselors, scientists/researchers, lawyers, biotech
experts, pharmaceutical company representatives, ethicists/human
rights, legislators, and citizens.
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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 individuals 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.
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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.
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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.
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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?
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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?
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My Research 5. Does genetic modification alter a childs
identity? (The question of identity of human beings should be
clearly distinguished from the question of the beginning of life of
the person.)