by Zachary Shapiro
Psychological research on “affective forecasting,” studying individuals’ ability to predict their future emotional states, consistently shows that people are terrible at predicting their ability to adapt to future adversity. This finding has particular significance for medical decision-making, as so many serious health decisions hinge on quality-of-life judgments, generally made by an individual balancing risks and benefits they perceive of a future state that is likely to result from a given therapeutic regime.
Much of the research on affective forecasting has focused on high-stakes events, restricting study participation to those likely to find the study event particularly significant, such as tenure-track faculty, registered voters, or sports enthusiasts. Despite a growing body of research on forecasting biases in the medical domain, little work has previously systematically considered such biases in clinical genetics. However, as the prevalence of genetic testing has increased, scholars have noticed forecasting deficiencies with increasing regularity.[1]
While evidence suggests that those who receive genetic testing, whether they are non-carriers or carriers of specific genes, differ in terms of short-term general psychological distress, their long-term distress levels do not differ significantly. Results of research into the affective reactions of patients undergoing predictive genetic testing suggest that, in general, psychological outcomes are not as negative as one may expect.
One systematic review, focused on the use of predictive genetic testing for Huntington’s disease, hereditary breast and ovarian cancer, familial adenomatous polyposis and spinocerebellar ataxia, found little evidence of psychological distress.[2] Interestingly, none of the papers reported increased distress (general and situational distress, anxiety and depression) in carriers or non-carriers at any point during the 12 months after testing, and both carriers and non-carriers demonstrated decreased distress after testing. Researchers concluded that genetic results were rarely predictive of distress more than one month after testing.
Early affective forecasting literature (largely) focused on tests for Huntington’s Disease (HD). Even though such testing reveals risk factors for a devastating condition, with no therapeutic potential, researchers found that carriers had a strong increase in pessimistic expectations but showed a decline to baseline levels six months later. Non-carriers reported a steep decline in hopelessness compared with their pretest conditions. Six months after the disclosure of the test results, both gene carriers and non-carriers reported a significant decrease in unwanted intrusive thoughts about HD.[3]
This effect seems to extend to other genetic tests, as distress among carriers of the BRCA 1 or 2 gene mutation (which can predict increased susceptibility to breast cancer) increased shortly after receiving results and returned to pretest levels over time.[4]
This research highlights that we may have something similar to an emotional immune system, able to target and ameliorate the physiological ill-effects of negative information. This emotional immune effect should be accounted for when offering predictive genetic testing, or designing interventions related to genetic testing.[5]
This has important implications for health policy regarding genetics. Recognizing affective forecasting biases can help us design better interventions for those who receive predictive genetic testing. It also might cause us to be skeptical of arguments that increased genetic testing will cause widespread psychological harm, as it seems possible that the medical value of this information may outweigh any long-term psychological distress. This information can help inform regulators who have to make difficult decisions concerning whether, and how to, regulate independent companies that provide genetic testing for consumers, a subject of no small scholarly debate. [6]
While there has been a growing movement to recognize and legislate a “Right Not To Know” genetic information, recognizing affective forecasting biases should cause us to critically consider any argument that relies on the potential for long-term psychological distress related to receiving genetic information. Recognizing forecasting biases has further implications when discussing Big Data and genetics, as the combination of the two has the potential to reveal sensitive information about individuals, through allowing inference-making only possible when combining large data sets in novel ways.
While researchers studying Big Data often warn of negative psychological impacts of learning sensitive genetic information, recognizing affective forecasting biases may reveal that fears concerning the increased availability of genetic testing might be overstated, as seemingly stressful genetic information may present fewer psychological problems in the long run.
Let me know what you think!
[1] Peters, S. A., Laham, S. M., Pachter, N., & Winship, I. M. (2014). The future in clinical genetics: affective forecasting biases in patient and clinician decision making. Clinical genetics, 85(4), 312-317.
[2] Marita Broadstock et al., Psychological Consequences of Predictive Genetics Testing: A Systematic Review, 174 Eur. J. Hum. Genet. 275-280 (2014
[3] Meiser B, Dunn T. Psychological impact of genetic testing for Huntington’s disease: an update of the literature. J Neurol Neurosurg Psychiatry 2000: 69: 574 – 578.
[4] Hamilton JG, Lobel M, Moyer A. Emotional distress following genetic testing for hereditary breast and ovarian cancer: a meta-analytic review. Health Psychol 2009: 28: 510 – 518. 53.
[5] Gilbert, Daniel T., et al. “Immune neglect: a source of durability bias in affective forecasting.” Journal of personality and social psychology 75.3 (1998): 617.
[6] See: https://www.theguardian.com/commentisfree/2013/dec/04/23andme-consumer-genomics-fda-ban-regulation and https://www.wired.com/2014/01/the-fda-may-win-the-battle-this-holiday-season-but-23andme-will-win-the-war/