Government Publicatons For GATTACA

Sam Spence LIS 5143 12/11/2007
Annotated Bibliography
Issues in Bioethics which might create a dystopian future similar to GATTACA
1) Genetic Non-Discrimination
 U.S. House. Committee on Education and the Workforce. Genetic Non-
Discrimination: Examining the Implications for Workers and Employers Hearing,
22 July 2004. Washington: Government Printing Office, 2004.
(http://www.access.gpo.gov/congress/house)
 This hearing deals with issues of genetic profiling. It recognizes the potential for
employers and insurers to discriminate against people with high genetic risk
factors.
 “With this unprecedented potential for discovery, however, comes an equally
weighty challenge for public policymakers. The possibility of unjust use of
genetic information about individuals and their families must be addressed.”
2) Cloning, Embryos and Genetics
 The President’s Council on Bioethics. Human Cloning and Human Dignity: An
Ethical Inquiry. Washington: Government Printing Office, 2002.
(http://bioethics.gov/reports/cloningreport/index.html)
 This report tackles the moral issues of cloning and genetics with an eye to
presenting a course of action to the President. They recommend a ban on cloning-
for-reproduction, are split on cloning-for-research and also recommend that all
genetic research go on hiatus while it is evaluated morally.

 “Rather, cloning represents a turning point in human history—the crossing of an
important line separating sexual from asexual procreation and the first step toward
genetic control over the next generation. It thus carries with it a number of
troubling consequences for children, family, and society.”
3) Stem Cell Research
 The President’s Council on Bioethics. Monitoring Stem Cell Research.
Washington: Government Printing Office, 2004.
(http://bioethics.gov/reports/stemcell/index.html)
 The purpose of this report is to clarify the legal, ethical, scientific and medical
aspects of stem cell research. Though a lofty goal, the Council only tries to
understand these topics and makes no recommendations. The report’s aim is to
allow people of all technical expertise to understand the issues.
 “Our desire has been both to understand what is going on in the laboratory and to
consider for ourselves the various arguments made in the ongoing debates about
the ethics of stem cell research and the wisdom of the current policy. Although
both the policy and the research are still in their infancy, the Council is now ready
to give you and the American people an update on this important area of
research.”
4) Reproduction and Responsibility
 The President’s Council on Bioethics. Reproduction and Responsibility: The
Regulation of New Biotechnologies. Washington: Government Printing Office,
2004. (http://bioethics.gov/reports/reproductionandresponsibility/index.html)
 This report deals with bioethics as they relate to human reproduction. The report
weighs the potential benefits of various sorts of genetic reproductive assistance
against the pitfalls of introducing such technology into our culture.
 “The promotion of justice and equality, including equitable access to the use and
benefits of new technologies, equal respect and opportunity in a world that places
great emphasis on genetic distinctions, and the prevention of discrimination
against or contempt for genetic ‘defectiveness’ or ‘inferiority.’”
5) Alternatives to Embryonic Stem Cells
 The President’s Council on Bioethics. White Paper: Alternative Sources of
Pluripotent Stem Cells. Washington: Government Printing Office, 2005.
(http://bioethics.gov/reports/white_paper/index.html)
 This report details methods for obtaining stem cells with the same properties as
embryonic stem cells without destroying an embryo. The report details four such
methods and discusses their respective strengths and weaknesses.
 “…the worthy goals of increasing scientific knowledge and developing therapies
for grave human illnesses come into conflict with the strongly held belief of many
Americans that human life, from its earliest stages, deserves our protection and
respect.”
6) Genetic Screening and Testing
 United Nations Educational, Scientific and Cultural Organization. International
Bioethics Committee. Report on Genetic Screening and Testing. Paris: UNESCO,
1994. (http://portal.unesco.org/shs/en/ev.php-
URL_ID=2305&URL_DO=DO_TOPIC&URL_SECTION=201.html)
 This report considers problems associated with genetic screening and testing
under five categories: “ethical limits to genetic screening and testing”, “public
policy in genetic screening”, “genetic information and privacy”, “education and
civic freedom” and “accuracy and quality control”. The report goes on to suggest
ethical solutions to these problems.
 “Experience in some countries has already shown that problems may be raised in
connection with employment and insurance.”
7) Human Gene Therapy
Bioethics Committee. Report on Human Gene Therapy. Paris: UNESCO, 1994.
(http://portal.unesco.org/shs/en/ev.php-
 This report discusses the potential future of gene therapy. The committee
expresses reservations about the possible future uses of the technique, such as
guided evolution, and discusses the ethical consequences of such technology.
 “In thinking about the pace of development of gene technology, however, we do
well to recall that Watson and Crick's elucidation of the DNA model is barely 40
years old. The scientific advances since then have come at a breathtaking rate.
The pace of advance will accelerate, not slacken.”
8) Ethics and Neurosciences
Bioethics Committee. Ethics and Neurosciences. Paris: UNESCO, 1995.

 This report is concerned with the burgeoning neurosciences. While the committee
recognizes the potential benefits that neuroscience can provide for humanity, it
also recognizes the potential for unjust practices if ethical guidelines are ignored.
 “While the neurosciences do bring hope, notably in the area of mental health, they
are also a particularly dangerous terrain for genetic manipulation and for the use
of pharmacology and computer science for behavioural ends. As a possible
instrument of encroachment on human liberty and dignity, the neurosciences may
also turn out to be a poisoned chalice on which the worst forms of ideology may
thrive.”
9) Genetic Counselling
Bioethics Committee. Genetic Counselling. Paris: UNESCO, 1995.
 The committee sees this report as directly related to its reports on genetic
screening and gene therapy. The repot examines the then current state of genetic
counseling and discusses the moral and ethical implications for individuals being
counseled and for society as a whole.
 “Preventive ethics implies to anticipate new ethical issues, with the aim of
protecting the individual (born and to-be-born), his welfare, dignity and freedom,
so that progress of scientific research does not infringe on them.”

10) Human Population Genetics
Bioethics Committee. Bioethics and Human Population Genetics Research. Paris:
UNESCO, 1995. (http://portal.unesco.org/shs/en/ev.php-
 This report considers the ethical implications of human population genetics with
respect to the traditions and concerns of the population being studied. It seeks to
ensure cultural sensitivity and understanding in this practice and to avoid
practices similar to eugenics.
 “The prevailing attitude in science is that research is in and of itself a good.
Therefore, if properly explained and understood, participation should be
forthcoming. Communities and populations, however, have their own cultural
traditions and histories that need to be understood and respected.”
11) Plant Biotechnology
Bioethics Committee. Food, Plant Biotechnology and Ethics. Paris: UNESCO,
1995. (http://portal.unesco.org/shs/en/ev.php-
 The committee finds in this report that food biotechnology is, on the whole, a
positive thing. They believe that the populace has a right to know whether they
are purchasing genetically enhanced food or not, but do not share the recent
public concern over genetically modified foods.

 “There is a need for research on intellectual property protection for both
traditional and new genetics. How do we distinguish inventions from
discoveries.”
12) Experimental Treatment
Bioethics Committee. Ethical Considerations Regarding Access to Experimental
Treatment and Experimentation on Human Subjects. Paris: UNESCO, 1996.
 This report mainly focuses on the issue of access to experimental treatments and
drugs. It concludes that, though medical research regulations are complex and
convoluted, their benefit in providing fair access to experimental treatments is
valuable.
 “Still, it is virtually unthinkable that a body of practice that has had such a
beneficial effect in regularizing research procedures should be abandoned because
a few difficult problems.”
13) Confidentiality and Genetic Data
Bioethics Committee. Report on Confidentiality and Genetic Data. Paris:
UNESCO, 2000. (http://portal.unesco.org/shs/en/ev.php-
 This report establishes a person’s right to keep their genetic data confidential as
an extension of the human right to privacy. Several declarations of the right to
privacy are quoted.
 “The basis for the principle of confidentiality of genetic data is the human right to
privacy, which has been recognized in the major human rights instruments
adopted after the Second World War, starting with the Universal Declaration of
Human Rights.”
14) Embryonic Stem Cells
Bioethics Committee. The Use of Embryonic Stem Cells in Therapeutic Research.
Paris: UNESCO, 2001. (http://portal.unesco.org/shs/en/ev.php-
 The committee takes no specific stand on embryonic stem cells. It urges that each
nation develop its own guidelines. It does suggest criteria for donor IVF embryos
to ensure that both parents are informed and that alternative stem cell sources be
pursued.
 “However, the stem cells in which they are particularly interested are derived
from the human embryo, and this gives rise to the question: is it ethically
acceptable to derive cells from a human embryo prior to its implantation in utero
in order to cultivate and investigate these cells in the laboratory for therapeutic
research?”
15) Solidarity and International Cooperation

Bioethics Committee. Report of the IBC on Solidarity and International Co-
operation between Developed and Developing Countries concerning the Human
Genome. Paris: UNESCO, 2001. (http://portal.unesco.org/shs/en/ev.php-
 This report identifies the importance of sharing information about the human
genome. The ultimate risk is increasing the gap between developed and
developing countries through the creation of a genetic underclass.
 “States rapidly recognized the implications of the new scientific advances, but
they have not always been so prompt in undertaking projects of solidarity and
international co-operation as set out in the Universal Declaration on the Human
Genome and Human Rights.”
16) Ethics, Intellectual Property and Genomics
Bioethics Committee. Report of the IBC on Ethics, Intellectual Property and
Genomics. Paris: UNESCO, 2002. (http://portal.unesco.org/shs/en/ev.php-
 This report deals with the issue of patenting parts of the human genome. In the
end, the committee decides that the genome should not be patentable for a variety
of reasons.
 “The costs of future therapies and genetic tests will become prohibitive for most
human beings and nations. Science will be restrained instead of encouraged. And
a remarkable opportunity for humanity to act in a way defensive of the entire
human species will be lost.”
17) Human Genetic Data
Bioethics Committee. Human Genetic Data: Preliminary Study by the IBC on its
Collection, Processing, Storage and Use. Paris: UNESCO, 2002.
 This report examines the ethical implications of the use of human genetic data. It
lays out a set of principles and comments on the practical importance and
implications of those principles.
 “Every scientific revolution brings with it a host of ethical and social questions.
The so-called genetics revolution is no exception, giving rise to a broad
international debate on how the undoubted benefits of progress in this area can be
reconciled with certain core human values.”
18) Germ-line Intervention
Bioethics Committee. Report of the IBC on Pre-implantation Genetic Diagnosis
and Germ-line Intervention. Paris: UNESCO, 2003.
 The committee found that germ-line intervention is not yet possible. As for the
ethical implications of pre-implantation genetic diagnosis (used in IVF), the

committee maintained a plurality of opinions, as was the case with their stem cell
report.
 “It is recommended that PGD be limited to medical indications. Therefore sex
gender selection for non-medical reasons is considered to be unethical.”
19) International Bioethics Legal Body
Bioethics Committee. Report of the IBC on the Possibility of Elaborating a
Universal Instrument on Bioethics. Paris: UNESCO, 2003.
 This report examines the possibility of creating an organization to impose ethical
practice in biotechnology. The committee agreed that such an organization is a
worthy cause and should be supported.
 “The initiative of the Director-General of UNESCO in favour of a universal
instrument on bioethics deserves support. The UNESCO IBC accepts the
challenge of elaborating an international instrument on bioethics. That would
serve the interests of the international community as a whole, and of
disadvantaged people in particular.”
20) Consent
Bioethics Committee. Report of the International Bioethics Committee of
UNESCO (IBC) on Consent. Paris: UNESCO, 2007.

 This report examines in-depth the implications of consent in biotechnological
practices. It maintains its plurality of opinions and discusses consent in a variety
of situations.
 “Aware of the difficulties that the practical application of the principle of consent
may be faced with, by the present report IBC wishes to enlighten States,
organizations and citizens and support the actions they have undertaken or intend
to undertake, so that the consent of a person ‘for any medical intervention (…) or
scientific research’ be the expression of his/her freedom.”

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Sam Spence LIS 5143 12/11/2007

Issues in Bioethics which might create a dystopian future similar to GATTACA

 U.S. House. Committee on Education and the Workforce. Genetic Non-

Discrimination: Examining the Implications for Workers and Employers Hearing,

22 July 2004. Washington: Government Printing Office, 2004.

 “With this unprecedented potential for discovery, however, comes an equally

weighty challenge for public policymakers. The possibility of unjust use of

genetic information about individuals and their families must be addressed.”

2) Cloning, Embryos and Genetics

 The President’s Council on Bioethics. Human Cloning and Human Dignity: An

Ethical Inquiry. Washington: Government Printing Office, 2002.

presenting a course of action to the President. They recommend a ban on cloning-

for-reproduction, are split on cloning-for-research and also recommend that all

genetic research go on hiatus while it is evaluated morally.

 “Rather, cloning represents a turning point in human history—the crossing of an

troubling consequences for children, family, and society.”

3) Stem Cell Research

 The President’s Council on Bioethics. Monitoring Stem Cell Research.

Washington: Government Printing Office, 2004.

understand these topics and makes no recommendations. The report’s aim is to

allow people of all technical expertise to understand the issues.

4) Reproduction and Responsibility

 The President’s Council on Bioethics. Reproduction and Responsibility: The

Regulation of New Biotechnologies. Washington: Government Printing Office,

weighs the potential benefits of various sorts of genetic reproductive assistance

against the pitfalls of introducing such technology into our culture.

great emphasis on genetic distinctions, and the prevention of discrimination

against or contempt for genetic ‘defectiveness’ or ‘inferiority.’”

5) Alternatives to Embryonic Stem Cells

 The President’s Council on Bioethics. White Paper: Alternative Sources of

Pluripotent Stem Cells. Washington: Government Printing Office, 2005.

methods and discusses their respective strengths and weaknesses.

 “…the worthy goals of increasing scientific knowledge and developing therapies

6) Genetic Screening and Testing

 United Nations Educational, Scientific and Cultural Organization. International

Bioethics Committee. Report on Genetic Screening and Testing. Paris: UNESCO,

policy in genetic screening”, “genetic information and privacy”, “education and

ethical solutions to these problems.

connection with employment and insurance.”

7) Human Gene Therapy

 United Nations Educational, Scientific and Cultural Organization. International

Bioethics Committee. Report on Human Gene Therapy. Paris: UNESCO, 1994.

guided evolution, and discusses the ethical consequences of such technology.

 “In thinking about the pace of development of gene technology, however, we do

The pace of advance will accelerate, not slacken.”

8) Ethics and Neurosciences

 United Nations Educational, Scientific and Cultural Organization. International

Bioethics Committee. Ethics and Neurosciences. Paris: UNESCO, 1995.

of pharmacology and computer science for behavioural ends. As a possible

instrument of encroachment on human liberty and dignity, the neurosciences may

 United Nations Educational, Scientific and Cultural Organization. International

Bioethics Committee. Genetic Counselling. Paris: UNESCO, 1995.

counseled and for society as a whole.

so that progress of scientific research does not infringe on them.”

10) Human Population Genetics

 United Nations Educational, Scientific and Cultural Organization. International

Bioethics Committee. Bioethics and Human Population Genetics Research. Paris:

UNESCO, 1995. (http://portal.unesco.org/shs/en/ev.php-

ensure cultural sensitivity and understanding in this practice and to avoid

practices similar to eugenics.

 “The prevailing attitude in science is that research is in and of itself a good.

Therefore, if properly explained and understood, participation should be

forthcoming. Communities and populations, however, have their own cultural