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<title>Societal Concerns Arising from the New Genetics</title>
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<div align="right"><b><font face="Book Antiqua"><font
color="#800040"><font size="+3">Societal Concerns Arising from the
New Genetics</font></font></font></b><br />
<hr align="right" width="80%" />
<b><font face="Arial,Helvetica"><font color="#000000"><font
size="-1">Genomics and Its Impact on Science and Society: The Human
Genome Project and Beyond</font></font></font></b></div>
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face="Arial,Helvetica">Primer</font></a> <font size="-1">- <a
href="2.html"><font face="Arial,Helvetica">History</font></a> - <a
href="4.html"><font face="Arial,Helvetica">Insights</font></a> -
<a href="6.html"><font face="Arial,Helvetica">Medicine</font></a>
- <a href="7.html"><font
face="Arial,Helvetica">Benefits</font></a> - <a
href="8.html"><font face="Arial,Helvetica">Concerns</font></a> -
<a href="5.html"><font
face="Arial, Helvetica, sans-serif">Beyond</font></a> - <a
href="3.html"><font
face="Arial, Helvetica, sans-serif">Systems</font></a> - <a
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<p align="left"><font face="Arial,Helvetica"><b><font
face="Book Antiqua"><font color="#800040"><font size="+2">Critical
Policy and Ethical Issues<br />
</font></font></font></b></font> <img src="99-1395man.jpg"
height="147" width="110" align="left" /><font
face="Arial,Helvetica">Since its inception, the Human Genome
Project has dedicated funds toward identifying and addressing the
ethical, legal, and social issues surrounding the availability of
the new data and capabilities. Examples of such issues
follow.*</font></p>
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<ul>
<li><font face="Arial,Helvetica"><font color="#800040"><b>Privacy
and confidentiality of genetic information</b>.</font> <i>Who owns
and controls genetic information? Is genetic privacy different from
medical privacy?</i></font></li>
<li><font face="Arial,Helvetica"><b><font color="#800040">Fairness
in the use of genetic information by insurers, employers, courts,
schools, adoption agencies, and the military, among
others.</font></b> <i>Who should have access to personal genetic
information, and how will it be used?</i></font></li>
<li><font face="Arial,Helvetica"><b><font
color="#800040">Psychological impact, stigmatization, and
discrimination due to an individual's genetic makeup.</font></b>
<i>How does personal genetic information affect self-identity and
society's perceptions?</i></font></li>
<li><font face="Arial,Helvetica"><b><font
color="#800040">Reproductive issues including adequate and informed
consent and the use of genetic information in reproductive decision
making.</font></b> <i>Do healthcare personnel properly counsel
parents about risks and limitations? What are the larger societal
issues raised by new reproductive technologies?</i></font></li>
<li><font face="Arial,Helvetica"><b><font color="#800040">Clinical
issues including the education of doctors and other health-service
providers, people identified with genetic conditions, and the
general public; and the implementation of standards and
quality-control measures.</font></b> <i>How should health
professionals be prepared for the new genetics? How can the public
be educated to make informed choices? How will genetic tests be
evaluated and regulated for accuracy, reliability, and
usefulness?</i> (Currently, there is little regulation.) <i>How
does society balance current scientific limitations and social risk
with long-term benefits?</i></font></li>
<li><font face="Arial,Helvetica"><b><font color="#800040">Fairness
in access to advanced genomic technologies.</font></b> <i>Who will
benefit? Will there be major worldwide inequities?</i></font></li>
<li><font face="Arial,Helvetica" color="#800040"><b>Uncertainties
associated with gene tests for susceptibilities and complex
conditions (e.g., heart disease, diabetes, and Alzheimer's
disease).</b></font><i><font face="Arial,Helvetica">Should testing
be performed when no treatment is available or when interpretation
is unsure? Should children be tested for susceptibility to
adult-onset diseases?</font></i></li>
<li><font face="Arial,Helvetica"><b><font
color="#800040">Conceptual and philosophical implications regarding
human responsibility, free will vs genetic determinism, and
concepts of health and disease.</font></b> <i>Do our genes
influence our behavior, and can we control it? What is considered
acceptable diversity? Where is the line drawn between medical
treatment and enhancement?</i></font></li>
<li><font face="Arial,Helvetica"><b><font color="#800040">Health
and environmental issues concerning genetically modified (GM) foods
and microbes.</font></b> <i>Are GM foods and other products safe
for humans and the environment? How will these technologies affect
developing nations' dependence on industrialized
nations?</i></font></li>
<li><font face="Arial,Helvetica"><b><font
color="#800040">Commercialization of products including property
rights (patents, copyrights, and trade secrets) and accessibility
of data and materials.</font></b> <i>Will patenting DNA sequences
limit their accessibility and development into useful
products?</i></font></li>
</ul>
<center>
<p align="left">*For more information, see <a
href="http://www.ornl.gov/TechResources/Human_Genome/elsi/elsi.html">
Ethical, Legal, and Social Issues</a></p>
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face="Arial,Helvetica">Primer</font></a> <font size="-1">- <a
href="2.html"><font face="Arial,Helvetica">History</font></a> - <a
href="4.html"><font face="Arial,Helvetica">Insights</font></a> -
<a href="6.html"><font face="Arial,Helvetica">Medicine</font></a>
- <a href="7.html"><font
face="Arial,Helvetica">Benefits</font></a> - <a
href="8.html"><font face="Arial,Helvetica">Concerns</font></a> -
<a href="5.html"><font
face="Arial, Helvetica, sans-serif">Beyond</font></a> - <a
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src="HGPlogo1.jpg" border="0" height="107" width="108" /></a></td>
<td>The online presentation of this publication is a special
feature of the <a
href="http://www.ornl.gov/TechResources/Human_Genome/">Human Genome
Project Information Web site</a>.</td>
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