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, a brief overview is given, and the investigator and others involved in this area of research are invited to review the guidelines. At all times, as mentioned below, genetic counseling must be made available to participants in the area of 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.
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" with 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 participant before the research is done.
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.
Genetic research on stored biological material
For more information on this subject, refer to the section on "Research using stored biological material" on this website.
For any questions please contact us.