Ethical Situations What does the patient have the right to know?

What the patient has the right to know (regarding genetic tests) is: a complicated matter and many people, including experts, have varying opinions. The information patients receive from genetic testing can have significant consequences, especially if it leads a pregnant woman to have an abortion. The ethical principles that arise in situations like this are varied and are often in conflict with each other. The ethical decisions in genetic counseling would be fairly cut and dry if the principle of autonomy was the only one that was considered. However, by doing this a counselor may be ignoring the other ethical concerns like: what is best for society and being fair to other people (regarding who the patient's decisions are affecting).

Who should have decision making power in our society on issues of genetic / medical testing?

Regarding the "Dwarfism Case," Alexander Capron believes that allowing this woman to abort the healthy child based on the genetic test is wrong. As, this would be no different than: aborting a baby (because it's not the desired sex). He also states that, "While a woman has a right under Roe v. Wade to abort for whatever reasons convince her, fetus is: more important than the patient's autonomy. This is because killing the fetus would be: ethically wrong, unnecessarily cruel, and unjust. However, Rosalie Goldberg and Eugene Pergament believe that a patient should indeed have the right to make that decision, regardless of whether it is an entitlement or not (68).
It should be pointed out the Caplan is a Sociologist and Goldberg as well as Pergament are Genetic Counselors / Geneticists. This leads naturally to the question of who should have decision making power regarding genetic testing issues. Personally, I agree with Capron that full patient autonomy is a dangerous thing. I would view it as: morally and ethically wrong to carry out the test in the Dwarfism Case. This is because I know that it would result in the abortion of a perfectly healthy fetus. I would further submit that there is something wrong with two parents who cannot accept a healthy child. The reason why is: it will not end up being like them physically. I also feel that Pergament and Goldberg would be unethical for: allowing this patient full autonomy.

Do other people (besides the patient) have the right to know the information if it affects them?

Yes. The experts all agreed…