What does it mean to say that a patient could be stigmatized by being identified as at risk for psychosis? On a personal basis, stigma would have to affect the patient's sense of self, or relationships with friends and family. The idea of being at risk for psychosis might affect an individual's choices in terms of education, employment, or other life plans. It might impact the extent to which such plans and aspirations would be supported by other family members. Whether or not this anxiety over being at risk for psychosis is a meaningful issue needs to be looked at in the context of a given person's life. The more that symptoms are causing turmoil, the more that the individual is currently in distress, the more that the idea of being at risk is just a footnote. Interviews with the parents of patients at prodromal clinics have shown that their concerns about stigma are strongly dependent on the behavior of the patient prior to any interaction with the clinic. Rather than increasing apprehension, treatment may offer symptomatic patients and their families a reason for new optimism that outweighs any added anxiety about being at risk.
This distinction is a good example of how the stakes change if patients are younger or less symptomatic. In a population that is not immediately at risk or impaired, the idea of being vulnerable for psychosis could leave the false positives with a lasting sense of being fragile, damaged or a little bit sick. It might alter their goals, or make them less likely to be achieved; it could be harder to find motivation for a future that threatens to be taken away by illness.
Families might well reorganize their priorities in the light of this information. In some families this could be productive, allowing them to protect the at risk individual from stress and redefining behavioral problems as illness rather than character flaws. In others, the protective impulse might mean that in effect the family ceased to encourage growth, progress or achievement. For some false positives, the same type of redefining might result in family dynamics where eccentricities or other aspects of personality were viewed as pathology.
It remains to be seen whether this potential reevaluation of an at risk individual would be more helpful or subtly discriminatory, but in either case the effects could extend beyond family dynamics. Schools and other social institutions may also be affected. Schools have reason to be increasingly leery of students whose behaviors are perceived as odd, threatening or asocial. Teachers and administrators may see any student in a different light if they are concerned about a risk of psychosis, even if that student's behavior is otherwise acceptable. They might, for instance, emphasize safer choices and fewer challenges, limiting the opportunities ultimately available to at risk individuals.
It can be difficult to appreciate the difference between a susceptibility and a disease and it is easy to envision a situation wherein a suggestion of vulnerability might be mistaken for a quasi-diagnosis. In the internet age, patients and their families have access to a great deal of information, very little of which is screened or explained. Any blurring of the distinction between being at risk and already having a disease means that their expectations could be colored by all the available information and misinformation. Thus, it is essential that family education be a part of any prodromal research program.
While families need help in navigating the subtleties of vulnerability vs. disease, third parties with financial exposure may find it simpler to dispense with the distinction altogether. Individuals should have concerns about whether intervention for susceptibility will make them uninsurable or unemployable, and whether it will constitute a diagnosis in the eyes of insurers, meaning that from this point forward they will have on record a pre-existing condition. The concern with insurability is an ongoing issue wherever medical intervention involves risk assessment, and the issue is at the heart of genetic discrimination laws that have now been passed by a majority of state legislatures.
None of these issues are unique to psychosis, and the increasing availability of information based on screening procedures or risk assessment will impact all fields of medicine. Studies of insulin treatment for children at risk of Type 1 diabetes have been similarly debated, pitting the potential of preventative therapy against the medical and social drawbacks of early intervention. It is envisioned that families of children identified as at risk for Type I diabetes mellitus must also struggle with issues of stigma, fragility and protection, the vast and conflicting information available on the Internet, and concerns regarding privacy and future insurability for their children.
Women with a family history of breast cancer who pursue genetic testing for BRCA 1 or 2 mutations have also expressed analogous concerns. Lifetime incidence of breast cancer with one of the common BRCA mutations was estimated at up to 85% (Easton et al., 1995
; Ford et al., 1994
), but recent research indicates that the actual rates are lower, perhaps as low as 26–46% through age 70 (Satagopan et al., 2001
). Many people who are identified as being BRCA positive will never go on to develop breast cancer, whereas others will be identified well in advance of the presentation of disease. Breast cancer, like schizophrenia, presents an expense that would be significant to insurers.
Though there are no documented cases to date of discrimination secondary to BRCA test results, it is an issue that testing programs routinely cover during pretest counseling. Frequently, women opt to pay for testing out-of-pocket to avoid raising the suspicions of their insurers, present and future. Concerns with confidentiality have been so acute that the results of testing are often kept in a separate genetics file and are not included in the patients' medical records. What is relevant for those at risk for cancer is likely to be relevant for those at risk for schizophrenia, and far fewer individuals will have the option of paying out of pocket since treatment, unlike testing, is an ongoing expense.