Genetic information is directly linked to some of our most important values, some of them conflicting:

the right to self-determination the right to privacy and to confidentiality the right to work, have a house, and to be an active member of society the right not to know and not to be discriminated against on the basis of genetic characteristics the responsibility towards other people (third parties) interests of employers and insurers

Below are some ethical issues concerning genetic information.

Privacy and confidentiality because 'these are my genes'
Our genetic information is part of ourselves and should be treated like any other private information.

Confidentiality and fear of discrimination Someone with a known genetic condition might face discrimination when buying a house, life insurance or when applying for a job. This is the main reason why third parties (ie. anyone other than the doctor and the patient) should not be given access to an individual's genetic information.

However… does privacy cover the sphere of the family?
Sometimes, genetic testing involves other family members and thereby breaches the confidentiality of the patient. In order to obtain consent, details of the disorder must be disclosed.

And once the results are known, who owns them? The individual? Other family members? The family as a whole?

Don't we all deserve protection?
Even if you were at risk of a genetic disease, shouldn't you be able to obtain life insurance or a bank loan at an acceptable cost?

Moreover what if in the long run a cure is discovered? Would it have been acceptable to penalise you now? Should society at large cover at least part of the costs?

Insurance dilemmas Unlike infectious diseases, genetic conditions exist at a fairly stable incidence in our society. There is no epidemic of genetic conditions. Thus, they are already reflected in the tables used by insurers to establish rates. Yet isn't it true, that if you knew you had a genetic disease you would have the tendency to take out life insurance? Would that be fair to insurance companies?

Medical secrecy dilemmas
Should doctors disclose results of genetic tests for diseases for which a cure is not available? Should only treatable and preventable diseases be candidates for genetic testing?

Should doctors consider genetic information as the property of the whole family (including the as yet unborn)? Does this go as far as to abandon their medical duty of secrecy in some cases?

Remaining ignorant for reasons of deniability
Suppose an insurance contract requires the individual to tell all she knows about her genetic condition, and any information withheld would constitute grounds for dismissing later claims. A person in this situation might well decide not to take a test and to remain ignorant, since she can't be penalised for withholding information she doesn't have.

Remaining ignorant simply because knowing is a burden
Knowing is a burden. Knowing might cause guilt, anxiety, impaired self-esteem, social stigma, and possible insurance and employment discrimination.

Remaining ignorant for personal reasons For some people, the discovery that they have a genetic condition could so affect them that the quality, joy, and purpose of their lives would evaporate. Moreover, even if the results of a genetic test were negative, some people might experience the reaction commonly known as 'survivor's guilt', as they contemplate the prospects of their less fortunate siblings or other relatives. Such reactions will vary from person to person. We are individuals in how we each deal with the disappointments and tragedies in our lives.

However, is it responsible to remain ignorant?
If an individual has the gene for Huntington's disease, his or her children have a 50 percent chance of getting it as well. Would knowing have changed anything?

If a woman's sister, mother, and aunt have had breast cancer, then it is likely that the woman is at greater risk of getting breast cancer than the general population. What would she gain by knowing?

Does a 50-year-old parent of young children have the right to remain ignorant of whether he is at high risk of getting Alzheimer's disease within the next ten years?

Should there be a right not to be tested?
Is there a right not to be screened? If you are ill, a variety of diagnostic tests are done, including tests for genetic diseases. Should the widely acknowledged right to refuse treatment include the right to refuse diagnostic genetic tests? Is this responsible?