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Ethical Issues
  Is Genetic Information Different?
By Doris Teichler Zallen, PhD

Reviewed by Paula Gregory, PhD and Miriam Komaromy, MD

Genetic tests are the newest addition to a growing variety of medical tests. All medical tests are designed to provide important information about your state of health. For genetic tests, as for other medical tests, there can be tension because of anticipation of the test, and the results can be troubling for people who receive bad news. Yet many people consider genetic tests — and the information they provide — to be different from other types of medical tests. Why is this the case? There appear to be several reasons:



Sharing of Genes in Families

More than other types of testing, a genetic test of a single individual can be viewed as a test of a whole family.
Genes are shared in families, passed from parents to children to grandchildren. This means that a genetic test, which provides information about the genetic status of one person, can also alert others in the family to the fact that they also may have the same mutation. More than other types of testing, a genetic test of a single individual can be viewed as a test of a whole family.

Family members differ in their preferences. Some may be eager to learn more about their genes and want to find out if they too have inherited a particular gene. Other family members will not want to know. However, if one family member does get testing, their subsequent behavior, for example suddenly engaging in frequent medical screening for a particular disease, can provide strong clues about the genes another family member may have inherited — whether they wanted to know or not.

On occasion, genetic information has also created rifts in families as people blame one another for being the source of a flawed gene. These sometimes intense reactions do not seem to occur as regularly and deeply for other types of medical tests.



The Predictive Possibilities of Genetic Tests

Genetic tests can offer a peek into the future.
Most medical tests are used to ascertain your current state of health. However, some genetic tests can offer a peek into the future by revealing the presence of a gene that can bring on a disorder later in life, or a gene that increases susceptibility to a health problem. Some people find this information helpful in planning for the future. Such planning could include changes in lifestyle to ward off future health problems, undergoing more frequent checkups to catch problems in the early, more treatable stages, or financial planning to prepare for future medical needs. Other people find the information useless. For them, it is a dark cloud that diminishes the pleasures of the present with constant health worries, especially when there may be no treatments or therapies available that can delay or prevent the onset of a disorder.



The Current Status of Genes in our Society

During recent years, scientists have alternated between thinking that biological influences like our genetics (nature) or environmental influences (nurture) are most important in determining human health. The current focus is on genes as the most important factor in determining human health.

The current focus is on genes as the most important factor in determining human health.
The reasons for this are complex. One factor is the amount of genetic information that is flowing from the Human Genome project. Scientists and others have used language like the "search for the Holy Grail" or the "book of life" to describe the project. Such language inevitably endows genes with a special status.
Important environmental contributions to health have been deemphasized.

This view is intensified by all the media coverage devoted to genetics. Newspapers and television programs provide a steady stream of reports detailing dramatic new findings about genes and connecting them to a variety of human traits. The message is sent out repeatedly that our genes define who we are. Equally important environmental contributions (such as diet, education, exposure to workplace chemicals and the like) have slipped into the shadows.

As a result, many people feel more deeply about their genes than they do almost any other aspect of their lives. They guard their own genetic information — or what they consider their genetic secrets — more zealously than they do other types of very personal information. For example, one series of consumer interviews found that people are reluctant to share genetic matters even with religious advisors with whom they feel comfortable sharing other, very private, aspects of their lives. In addition, many studies have revealed that learning of the presence of a mutation can damage self-image, create anxiety, and undermine psychological well-being. Learning that you are spared but that a loved one is not can also cause considerable distress.



Past Misuses of Genetics (The "Eugenics" Movement)

History has provided many painful lessons about the misuse of genetic information.
Genetic information is also different because of how it has been used in the past. This history has provided painful lessons in the misuse of information, in the mistreatment of people, and even in the planned destruction of whole groups of people because of beliefs about their genes.

Much of this unfortunate history can be traced to the ideas of Francis Galton — an illustrious British scientist, mathematician, and a cousin of Charles Darwin. In 1883, Galton's notion of biologically superior and biologically inferior humans became codified in the term "eugenics." Eugenics was proposed by Galton as the explanation for why some people achieved more in society — economically, socially, or politically. Such individuals, Galton claimed, were superior in hereditary endowment. On the other hand, people from the lower classes were inferior in their biological endowment. Curiously, social or economic factors that could account for these features were disregarded.

Eugenic views became the basis of strategies to improve the qualities of the human race.
Eugenic views became the basis of strategies to improve the qualities of the human race. It was felt that those with good qualities should be encouraged to reproduce more abundantly and those with inferior qualities should be discouraged from reproducing. These views were to become the basis of eugenics programs in countries throughout the world.

In the early decades of the 20th century, eugenic ideas spread rapidly to many different countries. In the United States, eugenic ideas flourished. They yielded immigration laws meant to keep out those thought to have inferior genes (for example, the Immigration Act of 1924) and involuntary sterilization laws meant to keep citizens thought to have defective genes from having children. An estimated 60,000 such sterilizations were carried out in over thirty states. Most of those who were sterilized had been confined as children in state institutions. They were mostly poor, uneducated, and from unfortunate homes.

The worst excesses and the best known occurred in Nazi Germany. There, eugenic ideas were fanned by a long-festering hatred of minorities and by a political and economic crisis. This set off a chain of increasingly dire events. Laws permitting compulsory sterilization of people deemed unfit were followed by policies that permitted involuntary euthanasia of children with serious physical or mental illness. Then came the adults. It ended in the genocide of the holocaust.

The horrors of the Holocaust and the growing recognition that most traits are NOT caused by single genes acting in isolation from the environment led to the repudiation of eugenic ideas. However, it is this history of misuse of genetic information that lurks in the background when genetic tests are being considered.



Concerns About A "New Eugenics"

The history of the eugenics movement has led to the current concern — even fear — that the new forms of DNA testing, whether for the presence of single genes that can bring on severe illnesses or for genes that can provide clues about susceptibility to chronic diseases, could lead to stigmatization and discrimination. There are concerns that genetic test results could be used to deny insurance, jobs, educational opportunities, and even government services for mutation carriers or their nearest relatives.

At present, there is no hard evidence to indicate that genetic discrimination is widespread. There are anecdotal reports in the literature that indicate that it has occurred, but in many cases the details haven't been investigated. Still, this concern about the possibility that genetic test results could lead to discrimination emerges time and again in interview studies.

Federal and state governments are taking steps to offer protections to individuals who have obtained genetic information about themselves or their families. In some places, there are restrictions on what insurance companies can ask when deciding whether to insure someone or how much to charge for insurance. The Americans with Disabilities Act may also serve to protect individuals who are perceived by employers to have a disability as a result of a genetic-test result.



The Difficulty in Obtaining Genetic Information

Unlike the situation for other types of medical information, it is often difficult to navigate your way through the medical community to get genetic information. Many physicians have limited training in genetics or find it difficult to keep up. Studies have shown that many people have received little or no genetic information from their physicians at the time of the first diagnosis of a genetic condition. Relatively few people at risk for inherited conditions were referred to genetic specialists.

The best way to obtain reliable genetic information is to consult with a genetic counselor. You can often get referrals to a genetic counselor through your doctor or medical facility.



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