Avoiding “toxic knowledge”: the importance of framing personalized risk information in clinical decision-making

Papers of special note have been highlighted as: • of interest

References

• 1. Faulkner E, Holtorf A-P, Walton S et al. Being precise about precision medicine: what should value frameworks incorporate to address precision medicine? A report of the Personalized Precision Medicine Special Interest Group. Value Health 23(5), 529–539 (2020).
  MedlineGoogle Scholar
• 2. Middleton A, Morley KI, Bragin E et al. Attitudes of nearly 7000 health professionals, genomic researchers and publics toward the return of incidental results from sequencing research. Eur. J. Med. Genet. 24(1), 21–29 (2016).
  Google Scholar
• 3. Sepucha KR, Borkhoff CM, Lally J et al. Establishing the effectiveness of patient decision aids: key constructs and measurement instruments. BMC Med. Inform. Decis. Mak. 13(2), S12 (2013). • Outlines key, evidence-based indicators of decision-making quality and provides a basis for evaluating the quality of a decision aid.
  MedlineGoogle Scholar
• 4. Sankar PL, Parker LS. The Precision Medicine Initiative's All of Us Research Program: an agenda for research on its ethical, legal, and social issues. Genet. Med. 19(7), 743–750 (2017).
  MedlineGoogle Scholar
• 5. Trevena LJ, Zikmund-Fisher BJ, Edwards A et al. Presenting quantitative information about decision outcomes: a risk communication primer for patient decision aid developers. BMC Med. Inform. Decis. Mak. 13(2), S7 (2013). • Points out challenges for effectively communicating risk to patients in ways that facilitate their understanding and recommend a set of principles for improving the quality of risk communication in practice.
  MedlineGoogle Scholar
• 6. Knäuper B, Kornik R, Atkinson K, Guberman C, Aydin C. Motivation influences the underestimation of cumulative risk. Pers. Soc. Psychol. Bull. 31(11), 1511–1523 (2005). • In their study of patient understandings of cumulative risk, the authors found that patients overestimate cumulative risk, and that risk understandings were mediated by motivation.
  MedlineGoogle Scholar
• 7. Fuller R, Dudley N, Blacktop J. Older people's understanding of cumulative risks when provided with annual stroke risk information. Postgrad. Med. J. 80(949), 677–678 (2004).
  Medline CASGoogle Scholar
• 8. Treff NR, Eccles J, Lello L et al. Utility and first clinical application of screening embryos for polygenic disease risk reduction. Front. Endocrinol. 10 (2019). https://www.frontiersin.org/articles/10.3389/fendo.2019.00845/full?fbclid=IwAR0IStLKXLTIZcUUutZ46F0NRhkpd_hca05uPry-wMDI1w_vSguCktPwkzc • Presents the first case reports of polygenic embryonic screening and reveal that some individuals who received results suggesting elevated risk among their viable embryos decided against implanting any of those embryos, due to uncertainties in how and whether to act upon cumulative personalized risk estimates.
  MedlineGoogle Scholar
• 9. Lázaro-Muñoz G, Pereira S, Carmi S, Lencz T. Screening embryos for polygenic conditions and traits: ethical considerations for an emerging technology. Genet. Med. doi:10.1038/s41436-020-01019-3 (2020). • Reviews ethical considerations for polygenic embryo screening, including the challenge of meaningfully interpreting and incorporating complex polygenic risk information into clinical and reproductive health decisions.
  Google Scholar
• 10. Blumenthal-Barby JS, Kostick KM, Delgado ED et al. Assessment of patients' and caregivers' informational and decisional needs for left ventricular assist device placement: implications for informed consent and shared decision-making. J. Heart Lung Transplant. 34(9), 1182–1189 (2015).
  MedlineGoogle Scholar
• 11. Bruce CR, Kostick KM, Delgado ED et al. Reasons why eligible candidates decline left ventricular assist device placement. J. Card. Fail. 21(10), 835–839 (2015).
  MedlineGoogle Scholar
• 12. Crozier S, Robertson N, Dale M. The psychological impact of predictive genetic testing for Huntington′s Disease: a systematic review of the literature. J. Genet. Counsel. 24(1), 29–39 (2015).
  Medline CASGoogle Scholar
• 13. Hoffman-Andrews L. The known unknown: the challenges of genetic variants of uncertain significance in clinical practice. J. Law Biosci. 4(3), 648–657 (2018).
  MedlineGoogle Scholar
• 14. Bernhardt BA, Soucier D, Hanson K, Savage MS, Jackson L, Wapner RJ. Women's experiences receiving abnormal prenatal chromosomal microarray testing results. Genet. Med. 15(2), 139–145 (2013).
  MedlineGoogle Scholar
• 15. Desai P, Haber H, Bulafka J et al. Impacts of variants of uncertain significance on parental perceptions of children after prenatal chromosome microarray testing. Prenat. Diagn. 38(10), 740–747 (2018).
  MedlineGoogle Scholar
• 16. Kostick KM, Brannan C, Pereira S, Lázaro‐Muñoz G. Psychiatric genetics researchers' views on offering return of results to individual participants. Am. J. Med. Genet. 180(8), 589–600 (2019). • Reports on psychiatric genetic researchers’ perspectives on returning results to individual research participants, including how researchers might differently address results that are actionable, nonactionable, incidental or variants of unknown significance.
  MedlineGoogle Scholar
• 17. Martin LA, Finlayson SRG, Brooke BS. Patient preparation for transitions of surgical care: is failing to prepare surgical patients preparing them to fail? World J. Surg. 41(6), 1447–1453 (2017).
  MedlineGoogle Scholar
• 18. Swetz KM, Freeman MR, AbouEzzeddine OF et al. Palliative medicine consultation for preparedness planning in patients receiving left ventricular assist devices as destination therapy. Mayo Clin. Proc. 86(6), 493–500 (2011). • Finds that when patients receiving an left ventricular assist device therapy as “destination therapy” (their primary option for staying alive) met with palliative medicine specialists to discuss a preparedness plan tailored to their goals, they were better able than those without a preparedness plan to effectively handle a range of adverse events postsurgery.
  MedlineGoogle Scholar
• 19. Kostick KM, Bruce CR, Minard CG et al. A multisite randomized controlled trial of a patient-centered ventricular assist device decision aid (VADDA Trial). J. Card. Fail. 24(10), 661–671 (2018).
  MedlineGoogle Scholar
• 20. Sun V, Kim JY, Raz DJ et al. Preparing cancer patients and family caregivers for lung surgery: development of a multimedia self-management intervention. J. Canc. Educ. 33(3), 557–563 (2018).
  MedlineGoogle Scholar