Ethical Issues

Updated: July 2, 2009

To test or not to test, that is the dilemma. Those in favour of testing suggest that knowledge is power and that, with knowledge, one can make appropriate decisions. Early diagnosis can lead to earlier and better treatment; relieve uncertainty; encourage changes in lifestyle that could minimize or even prevent the onset of disease; and allow for planning for the future. Concerns about testing revolve around issues of privacy and whether the individual will be branded as ‘ill’ and discriminated against in insurance and / or employment.

There are many factors to consider: the age of the individual; the implications for other members of the extended family (since Alpha-1 is a genetic disorder); the right of informed consent prior to testing; and possible psycho-social effects of a positive diagnosis for a disorder for which there is currently no cure. Genetic counselling can help concerned individuals come to a decision that is appropriate for them.

Genetic Counselling

The American Alpha-1 Association’s Genetic Counseling Center provides free genetic counselling for patients, families, caregivers and healthcare professionals, including Canadians. They can be reached at 1-800-785-3177.

Individuals who are diagnosed with Alpha-1 need education and information, but they may also need support in dealing with their feelings or with the other social impacts of a genetic diagnosis. Your doctor and nurse can provide information about your medical condition, but the Counseling Center is there to help you deal with the social issues related to Alpha-1.

Before giving you advice the genetic counselor may first ask you about your personal goals, what resources are available in your area, how many family members are involved, and what kind of economic impact Alpha-1 may have on your life. In this way, the advice and information you are given fits your situation.A particular focus on the family can assist affected individuals, parents and extended family members deal with the issues of Alpha-1. All genetic counselors have special training and expertise in discussing the issues of children.