The roots of (in)equity in precision medicine: gaps in the discourse

References

• 1. Antman EM, Loscalzo J. Precision medicine in cardiology. Nat. Rev. Cardiol. 13(10), 591–602 (2016).
  MedlineGoogle Scholar
• 2. Mateo J, Steuten L, Aftimos P et al. Delivering precision oncology to patients with cancer. Nat. Med. 28(4), 658–665 (2022).
  Medline CASGoogle Scholar
• 3. Paranjape SM, Mogayzel PJ Jr. Cystic fibrosis in the era of precision medicine. Paediatric Respir. Rev. 25, 64–72 (2018).
  MedlineGoogle Scholar
• 4. Price ND, Magis AT, Earls JC et al. A wellness study of 108 individuals using personal, dense, dynamic data clouds. Nat. Biotechnol. 35(8), 747–756 (2017).
  Medline CASGoogle Scholar
• 5. Hood L, Price N. The Age of Scientific Wellness: Why the Future of Medicine is Personalized, Predictive, Data-rich, and in Your Hands. Harvard University Press, MA, USA and London, England (2023).
  Google Scholar
• 6. Schüssler-Fiorenza Rose SM, Contrepois K, Moneghetti KJ et al. A longitudinal big data approach for precision health. Nat. Med. 25(5), 792–804 (2019).
  MedlineGoogle Scholar
• 7. Popejoy A, Fullerton S. Genomics is failing on diversity. Nature 538, 161–164 (2016).
  Medline CASGoogle Scholar
• 8. National Academies of Sciences, Engineering, and Medicine. Improving representation in clinical trials and research: building research equity for women and underrepresented groups. The National Academies Press, WA, USA (2022).
  Google Scholar
• 9. Nature Medicine Editorial. Precision medicine needs an equity agenda. Nat. Med. 27, 737 (2021).
  MedlineGoogle Scholar
• 10. Hart TJ. The inverse care law. The Lancet 297, 405–412 (1971).
  Google Scholar
• 11. Power Asymmetries, participation, and the idea of personalised medicine. In: Handbook of Genomics, Health & Society. Prainsack BGibbon SHilgartner SLamoreaux J (Eds). Routledge, London, UK, 212–220 (2018).
  Google Scholar
• 12. Green S, Prainsack B, Sabatello M. Precision medicine and the problem of structural injustice. Med. Health Care and Philos 26, 433–450 (2023).
  MedlineGoogle Scholar
• 13. Tabery J. Tyranny of the Gene. Personalized Medicine and its Tread to Public Health. Penguin Random House (2023).
  Google Scholar
• 14. Sabatello M, Callier S, Garrison NA, Cohn EG. Trust, precision medicine research, and equitable participation of underserved populations. Am. J. Bioeth. 18(4), 34–36 (2018).
  MedlineGoogle Scholar
• 15. Ebeling MF. Afterlives of Data: Life and Debt Under Capitalist Surveillance. University of California Press (2022).
  Google Scholar
• 16. Khoury MJ, Bowen S, Dotson WD et al. Health equity in the implementation of genomics and precision medicine: a public health imperative. Genet. Med. 24(8), 1630–1639 (2022).
  Medline CASGoogle Scholar
• 17. Tabery J. A revolution is coming to medicine. Who will it leave out? The New York Times (2023).
  Google Scholar
• 18. Koleva-Kolarova R, Buchanan J, Vellekoop H et al. Financing and reimbursement models for personalised medicine: a systematic review to identify current models and future options. Appl. Health Econ. Health Policy 20(4), 501–524 (2022).
  MedlineGoogle Scholar
• 19. Koleva-Kolarova R, Vellekoop H, Huygens S et al. Budget impact and transferability of cost-effectiveness of DPYD testing in metastatic breast cancer in three health systems. Per. Med. 20(4), 357–374 (2023).
  CASGoogle Scholar
• 20. Wadmann S, Hauge AM. Strategies of stratification: regulating market access in the era of personalized medicine. Soc. Stud. Sci. 51(4), 628–665 (2021).
  MedlineGoogle Scholar
• 21. Németh B, Csanádi M, Inotai A, Ameyaw D, Kaló Z. Access to high-priced medicines in lower-income countries in the WHO European Region. Oslo Medicines Initiative technical report. WHO Regional Office for Europe, Copenhagen, Denmark (2022).
  Google Scholar
• 22. Robbins R, Nolen S. A dilemma for governments: How to pay for million-dollar therapies. The New York Times (2023).
  Google Scholar
• 23. Plüss JD. SWI swissinfo.ch. How can a drug cost $2.1 million? (2019). www.swissinfo.ch/eng/explainer_how-can-a-drug-cost--2.1-million-/44996728
  Google Scholar
• 24. Rabeharisoa V, Doganova L. War on diseases. Patient organizations' problematization and exploration of market issues. In: Healthcare activism. Markets, morals, and the collective goods. Geiger S (Ed.). Oxford University Press, Oxford, UK, 55–85.
  Google Scholar
• 25. Pope C. Drug.com. Why is Zolgensma so expensive? (2022). www.drugs.com/medical-answers/zolgensma-expensive-3552644/
  Google Scholar
• 26. Wadmann S. Disease classification: a framework for analysis of contemporary developments in precision medicine. SSM Qual. Res. Health 3, 100217 (2023).
  Google Scholar
• 27. Mazzucato M, Roy V. Rethinking value in health innovation: from mystifications towards prescriptions. J. Econ. Policy Reform. 22(2), 101–119 (2019).
  Google Scholar
• 28. Hillersdal L, Svendsen MN. Cancer currencies: making and marketing resources in a first-in-human drug trial in Denmark. In: Precision Oncology and Cancer Biomarkers: Issues at Stake and Matters of Concern. Bremer AStrand R (Eds). Cham, Springer, 45–60 (2022).
  Google Scholar
• 29. Mingorance A. Drivers of orphan drug development. ACS Med. Chem. Lett. 9(10), 962–964 (2018).
  Medline CASGoogle Scholar
• 30. Green S, Carusi A, Hoeyer K. Plastic diagnostics: the remaking of disease and evidence in personalized medicine. Soc. Sci. Med. 304, 112318 (2022).
  MedlineGoogle Scholar
• 31. Vogt H, Green S, Ekstrøm CT, Brodersen J. How precision medicine and screening with big data could increase overdiagnosis. BMJ 366, I5270 (2019).
  MedlineGoogle Scholar
• 32. Gabriels K, Moerenhout T. Exploring entertainment medicine and professionalization of self-care: interview study among doctors on the potential effects of digital self-tracking. JMIR 20(1), e10 (2018).
  Google Scholar
• 33. Bode AM, Dong Z. Recent advances in precision oncology research. NPJ Precis. Oncol. 2(1), 11 (2018).
  MedlineGoogle Scholar
• 34. Vogt H, Hofmann B. How precision medicine changes medical epistemology: a formative case from Norway. J. Eval Clin. Prac. 28(6), 1205–1212 (2022).
  MedlineGoogle Scholar
• 35. Plutynski A. Why precision oncology is not very precise (and why this should not surprise us). In: Personalized Medicine in the Making: Philosophical Perspectives from Biology to Healthcare. Beneduce CBertolaso M (Eds). Cham, Springer, 3–21 (2022).
  Google Scholar