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Advocacy in Genetics: A Teaching Guide and Workbook
Have We Gotten Too Big
For Our Genes?
The revelations of the HGP have already had, and will continue to have, a profound effect on science and medicine. Consequently, all of us will face issues of increasing complexity regarding the policies needed to govern the applications and implications of this knowledge. To this date, five percent of the budget governing the HGP has been set aside to assist in responding to the ethical, legal and social implications of this project. The advancement of the science in the HGP has surpassed the advancement of the policy used to govern this project. Policy dialogues about the HGP have made one thing clear: the science of genetics brings forth complicated issues that affect everyone.
Ethical, Legal, and Social Issues Related to the Human Genome Project
The Ethical, Legal, and Social Issues (ELSI) Committee, a formal part of the HGP, has played an integral role in raising – and to some degree, addressing - policy questions related to the outcome of the scientific discoveries connected to this project. The following issues are raised as a result of the ELSI Committee's, and others’, work regarding the increased availability of genetic information and its effect on humanity.
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Fairness in the use of genetic information by insurers, employers, courts, schools, adoption agencies, law enforcement agencies, the military, and others. Who will have access to genetic information, and how will it be used?
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Genetic testing of individuals for a specific condition, based upon family history and population-based screening of groups. Should genetic testing be performed when no treatment is available? Should parents have the right to test their minor children for adult-onset diseases? Are genetic test results reliable and interpretable by the medical community?
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Reproductive issues, such as use of genetic information in reproductive decision-making, and reproductive rights. Do primary care personnel understand these issues and properly counsel parents and couples about the risks and limitations of genetic testing? How reliable and useful is fetal genetic testing?
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Gene therapies to treat, cure, or prevent genetic disorders. Who decides what is normal and what is a disability or disorder? Are disabilities diseases? Do they need to be cured or prevented? Does searching for cures demean the lives of individuals presently living with disabilities?
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Genetic enhancement to supply a desirable characteristic in offspring (such as height), which does not involve the treatment or prevention of a disorder. What ethical and safety concerns does this raise? If this became common practice, how would it affect the diversity of the human gene pool?
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Education of healthcare providers, patients, and the general public. Who will provide the education to health care providers, and how will the public and patients assess competence? What is the best way to develop ongoing public and patient dialogues about genetic issues?
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Implementation of standards and quality control measures in testing procedures. How will genetic tests be evaluated and standardized for accuracy, reliability, and utility? (Currently there is very little regulation at the federal level.)
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Commercialization of products, including property rights such as patents, copyrights, and trade secrets. Accessibility of data and materials. Who owns genetic material and information?
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Philosophical quandaries regarding human responsibility, free will versus genetic determinism, and the meaning of "disease" and "health." Does someone’s genes make him or her behave in a certain way? Can people always control their behavior? What is considered acceptable diversity in a society?
Nationally and internationally the ethical, legal, and social implications of genetic discoveries have become highly relevant public policy discussions. At the Second International Bioethics Seminar in Japan in 1992, it was concluded that
All human beings will be affected [by the work of the HGP], and scientists should remember that they are sequencing the shared DNA of all humanity, and they, therefore, have great responsibility, to all peoples...for this and future generations, consistent with the ... goal of health for all.
Former President Bill Clinton, in his 1997 State of the Union address, specifically mentioned the Human Genome Project in the context of remarkable advances in medical science, when he said
The human genome project is now decoding the genetic mysteries of life. American scientists have discovered genes linked to breast and ovarian cancer...
In another speech that Former President Clinton made in 1997, published in Science, he proposed four guideposts for scientific research. Elaborating on one of the guideposts, he emphasized that
None of our discoveries should be used to label or discriminate against any group or individual.
In that speech Former President Clinton specifically noted that unlocking the secrets of our genetic code has the potential to identify hidden inherited tendencies that could be used by others to discriminate against or to stigmatize individuals and groups.
And finally, again at the Second International Bioethics Seminar in Japan in 1992, it was noted
All people need to contribute their view to this [Human Genome Project] discussion. It is apparent that the ability to argue rationally about bioethics is still to be developed in … many countries … all of us need to think about these issues and to open our minds to the ideas of others. It is the responsibility of all people to join this discussion, because the consequences of the use of genetic information may change the expectation of health and life itself.
The above examples illustrate that the ELSI Committee of the HGP and other national and international entities are concerned about the potential harm in the misuse of genetic information. It is time for consumer groups, professional associations, state legislators, and state government administrators to educate themselves about the accomplishments and implications of the HGP and to begin to define their roles in policy making in this arena.
The Mountain States Genetics Network Consumer Issues Committee invites you to join in the discussion and to find your seat in the policy arena. Have We Gotten Too Big for Our Genes? was written to help you understand how genetic research might affect each of us and how we can make a difference. Whether you are a professional, a parent, or a person affected with a genetic condition, you need to be heard!
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