The future: the challenge of applying knowledge to individuals

In professor McNeil´s opinion many researchers think that they have solved the problems associated with an illness as soon as they have understood why and how it develops, who is at risk of falling ill with the disease and what actions can be taken to treat or prevent it.

Do people want to know about their risks?
Researchers like to think that people are "rational", that they want to know about risks and take appropriate action. Experience from cigarette smoking and lung cancer, risk factors for HIV and problems associated with diet/exercise/increasing obesity/diabetes are however illustrations of how difficult it is to apply risk knowledge to human beings.

Psychosocial and medical consequences
As early as the eighties McNeil was interested in how to apply scientific knowledge about the importance of early life factors to the development of schizophrenia. Although fundamental knowledge on the etiology of schizophrenia was still lacking , scientists could try to develop knowledge and models for prevention in relation to other diseases where medical research had made more progress. McNeil thus led research projects on the psychosocial and medical consequences of

• discovering alpha-1-antitrypsin deficiency in newborn babies
  (a hereditary protein deficiency that gives a very high risk of developing a fatal lung disease if the individual is exposed to cigarette smoke)
  together with doctors Thelin & Sveger
• discovering fetal abnormalities during pregnancy (instead of after birth)
  (dr. Torstensson Nimby),
• discovering hemophilia among fetuses of pregnant gene carriers
  (drs. Tedgård & Ljung), and
• discovering the gene for hereditary breast- and ovary cancer among different individuals in an extended family
  (drs. Olsson, Kristoffersson & Gunnars).

Large variation in how much different individuals want to know
These studies investigated whether individuals want to know which diseases they and their children are at risk of developing, the reactions people show when they obtain this knowledge, and whether they actually take actions in relation to their new knowledge. A common finding in these studies was that there is great variation in how much people want to know about their own, and their children's risk for future disease. Even individuals who actively seek such knowledge may experience considerable problems when they learn about their risk. In some cases this knowledge has the opposite effect to that intended with the preventive care.

To apply knowledge on the individual´s own terms
It is apparent that both researchers and the medical system have to engage not only in actively seeking knowledge on the etiology and development of diseases, but also in finding gentle and efficient methods for applying this knowledge on the individual´s own terms. There is very little knowledge on these issues in relation to schizophrenia, but the research area becomes increasingly important when we approach an individual level of hereditary and environmental risk factors. These issues are especially important in diseases such as schizophrenia, where the disease and other mental problems often have been present in the family for a long time and when the relationship between the family and the medical services often is under pressure.