Question

INFORMED CONSENT It has been maintained that patients have a right to complete information about their conditions. But... What happens when the diagnosis reveals a genetic disorder that can have known harmful effects on their children? Should the spouse automatically be told about this result? Should the children be told? Do other relatives have the right to know this information? Who is the "patient" in these situations? Is it the one who has been tested? Is it the one who will be affected if they don't have the information?

What guidelines do you think should guide healthcare providers when it comes to such information being disclosed?

MY ANSWER:

Patients have a right to full disclosure of their medical conditions, even if that disorder could potentially have harmful effects on their children. In that case, I believe it is the healthcare provider's responsibility to thoroughly explain the situation. Including providing statistics for the patient and any tests that can be done to tell if the children have the disorder. I believe the spouse should be aware of the potential for a genetic disorder but feel that it should be the responsibility of the patient to tell the spouse. The provider should ask the patient if the patient wants the spouse to attend the visit to learn more about the disorder. Some couples knowing that there is a high potential for a genetic disorder may change their mind about having children. If the children are old enough to understand the scope of the genetic disease they should be informed of the situation as it could potentially have negative effects on their health. However, a child may not fully understand the potential for a genetic disorder and knowing could cause further fear and issues. Again, I believe it is the responsibility of the parents to discuss concerns with their children when the child is old enough to understand. I don’t think relatives need to know unless this is something that the patient wants to disclose to a relative. The patient is the person that came into the office with the issue. The children could choose to be patients at some point. Guidelines for information disclosure is providing accurate up to date info along with statistics and ways to get more answers for the patient.

PLEASE GIVE THOUGHTS TO THE FOLLOWING:

• Do you agree with these suggested guidelines? Why or why not?
• Which ethical principles are at play here?
• Were those principles incorporated in your peer's posts?

Answer 1

(1) I do agree with most of the points you have put forth, Just like it is the patient's right to be informed of his condition completely, the spouse also be informed about the conditions with it's statistical analysis as it have a role in the decision making about having children. They can choose to adopt if the condition is quite dangerous.

Similarly, the children also has the right to know aboythese condition because their life could also be at stake and they should be aware of it. Also, they are also going to marry some day or the other so the knowledge they know about their conditions will help them in making proper family planning.

The one thing I disagree is that there is no need to inform the relatives about this condition. But as it is a genetic disorder, there is a high chance that the relatives too could possibly end up having the disease. So if they are informed, they can have tests and diagnosis so as to know whether the same problem runs in their family too. So the close relatives should actually be informed about it.

(2) The most appropriate ethical principles would be Justice and Beneficence. The reason is that this is a discussion of whether or not the disclosure of the condition, to the spouse or relatives or children, is good for them. That if keeping the information away from them would actually cause an injustice or disclosing the do the benefits of stopping future complications. Therefore it's Justice and Beneficence at play.

(3) Based on the information received, these ethics were incorporated. He meant to do the same Justice and what is beneficial for them, the spouse and the children. One thing that missed out were the relatives but it's actually a misunderstanding that he does not think about them having the same chanced of having the condition due to heriditary links. But nevertheless, the intentions carried these ethics.