Concerns Arising from the New Genetics
and Its Impact on Science and Society: The Human Genome Project and
New Genetics Privacy Act Becomes Law
The Genetic Information Nondiscrimination Act
(GINA) became law on May 21, 2008. GINA prohibits
U.S. health insurance companies and employers
from discrimination on the basis of information
derived from genetic tests. In addition, insurers and
employers are not allowed under the law to request
or demand a genetic test.
Policy and Ethical Issues
From its inception, the Human Genome Project
dedicated funds to identify and address the ethical,
legal, and social issues surrounding the availability
of new genetic data and capabilities. Examples
of such issues follow.*
Privacy and confidentiality
of genetic information. Who owns and controls genetic information?
Is genetic privacy different from medical privacy?
Fairness in the use
of genetic information by insurers, employers, courts, schools, adoption
agencies, and the military, among others. Who should have
access to personal genetic information, and how will it be used?
stigmatization, and discrimination due to an individual's genetic makeup.
How does personal genetic information affect self-identity and society's
including adequate and informed consent and the use of genetic information
in reproductive decision making. Do healthcare personnel
properly counsel parents about risks and limitations? What are the larger
societal issues raised by new reproductive technologies?
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. 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? (Currently, there is little
regulation.) How does society balance current scientific
limitations and social risk with long-term benefits?
Fairness in access
to advanced genomic technologies. Who will benefit? Will
there be major worldwide inequities?
- Uncertainties associated
with gene tests for susceptibilities and complex conditions (e.g.,
heart disease, diabetes, and Alzheimer's disease).
Should testing be performed when no treatment is available or when
interpretation is unsure? Should children be tested for susceptibility
to adult-onset diseases?
Conceptual and philosophical
implications regarding human responsibility, free will vs genetic determinism,
and understanding of health and disease. 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?
Health and environmental
issues concerning genetically modified (GM) foods and microbes.
Are GM foods and other products safe for humans and the environment?
How will these technologies affect developing nations' dependence on industrialized
of products including property rights (patents, copyrights, and trade secrets)
and accessibility of data and materials. Will patenting DNA
sequences limit their accessibility and development into useful products?
*For more information, see Ethical, Legal, and Social Issues