Genetic Counseling Is A Process That

Problematic genetic counseling
Physicians who provide genetic counseling should receive better training in cross cultural communication, says anthropologist.

- Many families have difficulty understanding information provided by genetic counseling.

In his doctoral thesis on genetic counseling among families, she has followed 35 families who have received general or fetal medical genetic counseling.

In addition, she interviewed 19 medical geneticists counseling situation.

Most families were offered genetic counseling because they have previously had a child with a disability, illness, have lost a child or a miscarriage.

Health professionals are legally required to check whether patients have understood the information.

- But it said nothing about how this should be done and therefore it is difficult for those who mentor.


Family Loss-based marriage increases the risk

Marriage among relatives is common among many of the immigrant minority groups, including those of origin, and among the same people and space.

Public Health has determined that such marriages, first and foremost, cousin marriage, increases the risk of stillbirth, infant death and congenital malformations.

- The genetic counseling are families including information about the risk of recurrence of the incident, and it is important that they understand the information as intended.


Important to specialists

The importance of those who give advice are specialists in medical genetics or trained genetic counselors, because other health care professionals generally do not have the same expertise.

According to Public Health, intermarriage (marriage between second cousins ​​or closer) rare in the population as a whole and it does so little for public health.

However, it is a major cause of illness and death among children in those groups where intermarriage is common.

- This is a sensitive field that also can easily lead to stigmatization. In my analysis of the media debate in this area, it is clear that immigration and integration policy considerations have been governing for the debate, rather than a desire to assist the families in need of new knowledge.

- The vast majority of first cousins ​​are healthy children, but those affected have access to genetic knowledge. Ban on marriage form is not an appropriate means to limit the spread of getting sick children.

- We must also focus on correct knowledge and therefore it is important that health authorities also appear more clearly on the path.

Better cross-cultural communication

- Skills in cross-cultural communication is important in genetic counseling of patients or other minorities.

Families experienced guide is very different, partly depending on their assumptions.

- When the families were satisfied with the instructions, it meant not necessarily mean that they had understood the information. It could just as easily be that they felt well taken care of.

More cultural understanding

The doctors eagerly doing the best they can, but that they have little know how to improve the communication situation, and that the individual as a supervisor has to deal with these challenges alone.

The study also shows that doctors want more knowledge about each individual patient, using interpreters and appropriate counseling methods in order to provide better guidance.

She says that the supervisor not only need new knowledge, but they also need to reflect on their own understanding of knowledge.

- Cultural awareness is not just about understanding the patients, but doctors also understand their own socialization process and why those doctors think and act like they do.

Need for guidance


Followed 35 families who have received genetic counseling.

- This means more than learning to use an interpreter effectively. Doctors need to include knowledge about the cultural contexts to create a better communication situation.

There is also a need for another form of communication.

- Patients come to get access to medical knowledge, but doctors need to know anything about the patients' pre-understandingphase to personalize the information, which they have little doing.

It suggested therefore, that those providing genetic counseling should be given guidance from qualified anthropologists and other professionals.

Genetic Counseling Is A Process That
She believes that the responsibility to facilitate capacity building among those who provide genetic counseling, to be lifted away from the individual supervisor and to the governance and institutional level.

Stresses the importance of internal training, training through basic and specialist training and continuing education. This applies both to physicians and other health professionals who provide genetic counseling.