Discuss+ethical+considerations+in+research+into+genetic+influences+of+behaviour.+(Maia)

Genetics research – aims to identify particular genes involved in hereditary diseases

A. This may pose risks due to the link between genetic heritage and societal life. It can pose risks for the participant and their families, such as affecting their ability to obtain jobs or insurance.

B. Participants should always be informed of their privacy and confidentiality rights, and should know what will happen to any genetic material or information obtained in the study. They should be aware of the nature of the study and the procedure, and must sign a formal written consent form.

C. Researchers can preserve confidentiality by assigning a coding system to their results and protecting the anonymity of their participants in a way that researchers cannot link samples or information to particular people. 1. On the plus side, this prevents discrimination by genetic inheritances of future employers, insurance companies, police, and others. 2. However, the anonymity can limit the scientific value of the study because it prevents the researchers from following up the case and investigating further.

D. Unexpected information revealed in a study can harm research participants. 1. For example, misattributed paternity or unrevealed adoptions within a family 2. Discovery that a person carries the gene for a particular genetic disorder – stress and fear of the potential onset of the disorder

E. Aboriginal and ethnic groups – some may object to a genetic study as a cultural principle. Consent is a community matter for many of these groups as well as an individual concern.

F. Example – Iceland Study 1. Government sold personal medical records to a company for 12 years. The Icelandic citizens could say “no”, but permission was defaulted if no response was given 2. Invasion of privacy – the insurance companies could then deny them and their families coverage just because a certain disease runs in their family 3. Does the potential for human good outweigh the ethics of privacy?