Chapter 7 – Genetics and Stem Cell Research – Genetics

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The principal special feature of genetics research is that the result of the study applies not only to the proband but also influences her lineage both in the past and in the future. For example genetic studies demonstrated Thomas Jefferson's sexual relationship with his slave Sally Hemings and defined their descendants to this day. As we all know from television, genetic studies can be done from any tissue fragment that contains DNA so that studies of surgical specimens, biopsy materials, hair, epithelium and blood samples can all be utilized for extensive genetic studies.

Some DNA is more medically valuable than other. Samples from isolated populations in which a particular disorder is prevalent have a much greater probability of yielding the causal gene(s) because they have fewer genome variations than in the general population. Once isolated, the genetic material associated with the disorder has a good chance of yielding novel diagnostic and/or therapeutic approaches for the disorder.

A persistent question is whether the providers of the genetic material have any rights to the products created from their genetic material. These days, most consent forms are written explicitly to exclude intellectual property rights from the subjects. As might be imagined, this smacks of exploitation in the developing world. Negotiation of a monetary return to the community has sometimes been concluded. Important and lucrative products have been derived from individuals' genomes without their receiving royalties or other compensation. However, the knowledge, technical expertise, and capital needed to make a useful product from a blood or tissue sample come from the company not the donor.

Truly informed consent remains a problem with research subjects from both developed and developing countries. The sample providers may not understand the implications of genetic research for their families and their community. They surely don't understand the many uses to which their genetic material may be applied. They may not be aware that their genes may be used for pharmacogenetics. They are not likely to be fully cognizant of the forensic uses to which their genetic material might be put as our privacy rights continue to be eroded. They are putting their trust in the research establishment and the regulatory controls effected by the IRB managing grant or contract. Contributors to repositories may not be fully aware of the fact that they are trusting scientifically-oriented review boards to determine how their genetic material will be used long into the future. While anonymization is of great help, in the future, the genome itself may serve to identify the person, especially if they are in more than one repository.

Informed consents for genetic studies using CLIA-approved tests are usually designed to give the subjects the option of finding out their susceptibilities or not. Subjects are told they will not get any feedback from tests that are in the developmental stages because the reliability of such tests is not known.

In developed countries they might not perceive possible implications for stigmatization and for health and life insurability. Lack of health insurability affects Americans the most because every other developed country has a national health program. In those countries genetic information about disease risks motivates the system to preventive measures. In the U.S., revealing genetic information may exclude individuals from health insurance or make them join undesirable assigned risk pools. Thus knowing her susceptibilities may put a burden on the patient/subject to reveal what could be considered to be a preexisting condition. In fact, the rapidly increasing availability and declining costs of genetic information represent among the strongest arguments for a comprehensive health insurance program in the U.S.

Patenting genetic material for development as medical tools raises the question of commoditization. Individuals from many countries but especially developing countries feel that their genome is an important component of their selves or souls. Just as some groups feel that they lose something if a photograph is taken of them, many feel that they may be compromised by genetic studies and the patenting of their individuality. In some environments, communities express the belief that there is no such thing as informed consent for genetic studies because the individual is speaking for his ancestors and descendants.

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Chapter 7 - Genetics and Stem Cell Research - Genetics