Genetic counseling and the “family” in India

The discipline of genetic counseling was developed to empower families to make decisions related to reproduction when faced with a risk of a genetic disorder. In these countries (most of them being developed countries) for decisions related to health and reproduction, the patient and family are defined as the affected individual and the partners respectively. Involving other members of the family in the decision making process is a choice made by these primary individuals. This basic tenant may not be the case in a country like India. For example when evaluating repeated spontaneous abortions, in many instances, the female patient is accompanied not by her male partner, but by her mother or her partner’s mother. Sensitive personal information, which in the western nations would be considered confidential and meant only for the patient or the couple is expected to be shared with those individuals accompanying the patient. Is this appropriate? If the patient or couple are eventually going to include these individuals in the decision making process – maybe it is appropriate for the medical personnel (in this case the genetic counselor) to involve these members of the family in this process from the very beginning and all through the process. This inclusion will ensure that these members of the family are receiving the required important information first hand from a trained professional. The couple should be informed on the nature of information that will be included in the counseling session and offered the opportunity to decide who is included in the counseling session. Developing a protocol for genetic counseling which includes educating the patient/couple on the nature of information that would be provided and offering them the opportunity of selecting the members of the family they would like included during the session should be an important part of this protocol. As a first step towards developing such a protocol a project should be undertaken to study the issue of including family members during genetic counseling.