Introduction
The
ethical problems related to the area of genetic research are immense.
It is in this area of research ethics that those involved are most
challenged. Much has been written regarding genetic research from the
ethics point of view, and indeed the Tri-Council Guidelines deal
extensively with the many problems that arise. Here, nothing more than a
brief overview is given, and the investigator and others involved in
this area of research must review the guidelines in order to be
qualified to do genetic studies. At all times, as mentioned below, genetic counseling must be made available to participants in the area of genetic research.
Genetic research
The
meaning of the identification of a gene related to a given disease is
often not clear, and its significance is frequently not understood with
respect to it’s implication for the participant. Non genetic factors
such as environmental toxins may play a vital role in cancer development
in association with the presence of the gene.
As an example, the
presence of a newly discovered cancer gene, may not mean the patient
will definitely get the disease, and indeed the chance of the patient
getting it are often not really known early in the research. Conversely,
the absence of the gene may not mean the patient will not get the
disease.
Important questions that arise
Thus some of the most important questions the investigator must ask are:
"Will there be any useful service offered to the patient if the information is made available to him or her?"
"If the result is available, how will the patient "handle" this information from an emotional point of view?"
"Is there any intervention available that will prevent the serious consequences of possessing the gene?"
The risks/Breach of confidentiality
The
information obtained from genetic testing is potentially a risk to the
patient if strict confidentiality is not maintained. It is considered a
risk since the information obtained may affect the participants
insurability and job opportunities, as well as affect the participant’s
emotional well-being. The possible adverse response of family members to
the discovery of a gene in the family member who is the participant may
result in familial discord.ALL OF THESE RISKS MUST BE CLEARLY DISCUSSED
WITH THE PATIENT BEFORE THE RESEARCH IS DONE.
Genetic Counseling
Genetic
research does not end with the discovery of a gene as noted above. The
patient MUST BE OFFERED GENETIC COUNSELING ON AN ONGOING BASIS. The
emotional, social, and others problems must be identified in this
counseling process.
Counseling must be available for follow up should more questions arise on the part of the participant.
Policies
Please note the JGH’s policy on Data and Biological Material will be updated in 2012.
The JGH's policy on Data and Biological Material was adopted in September 2004.
McGill University - Policy on the Ethical Conduct of Research Involving Human Subjects