The Ethical Dilemmas of Using Genograms & Pedigrees

Genograms and pedigrees in genetic mapping are tools geneticists and doctors use for mapping patterns and predicting patterns in hereditary characteristics and illnesses. Pedigrees are simple tools showing gender of a people in a family, their relationships to one another, and presence or absence of a genetic characteristic. Genograms, as popularized by Monica McGoldrick and Randy Gerson in 1985, are pictoral displays of the basic pedigree data, plus information about occupation, education, life events, chronic illnesses and more.

Consent

• One of the ethical issues with using genograms for researching, analyzing and treating people is the issue of consent. The data on the genograms is often collected from a few family members, yet describes the personal information about many family members. Additionally, the genogram may have been compiled by a particular medical professional in order to address a particular issue, but is likely added to a large database, compiling data from hundreds of families for comparison purposes. It would be difficult to impossible to gain consent from each family member in hundreds of families in order to use the genograms for research, so data would have to be altered to disguise identity completely before using genograms for research.

Recruiting Subjects for Study

• Another of the ethical issues in pedigree and genogram studies is the recruiting aspect, along with the related risks and benefits. Subjects in genetic studies may feel pressured to participate, since a family member is requesting the information. There may be an element of coercion. Additionally, there are risks to participants in a genogram or pedigree study, such as: unexpected information that is upsetting; psychological stress; the possibility of errors; survivor guilt; social stigma due to findings; and possible discrimination from employers if a genetic abnormality or propensity is found.

Access to Information

• There are serious privacy concerns with any pedigree or genogram study. Some ethical concerns are that family members are uncomfortable sharing private information with others in their family. Family members may be upset at a lack of openness in other family members, although there is no legal right for family members to know a person's private medical history without consent. Participants must always know exactly what information will be revealed about themselves as a result of participating in a study, especially if pedigrees or genograms will be published.

Knowledge of Results

• Another ethical dilemma arises with giving participants access to data. In compiling genograms and pedigrees, researchers engage in genetic testing. It is possible to run into a conflict between the researcher's duty to warn a subject about genetic risks they discover and the right of a subject "not to know" if they so desire. Additionally, there are questions about whether other family members have a right to genetic data, and what to do if something potentially negative, such as false paternity, is discovered during research. Other ethical questions regarding data are: whether or not the subjects have a right to the results of the research and when the results should be made available; if there are harms that might arise from disclosing results; and whether the researchers will face liability issues if they do not disclose the results of research.