The Roots of (in)Equity in Precision Medicine: Gaps in the Discourse

References

• Antman EM , Loscalzo J . Precision medicine in cardiology. Nat. Rev. Cardiol. 13(10), 591–602 (2016).
   PubMed Web of Science ®Google Scholar
• Mateo J , Steuten L , Aftimos P et al. Delivering precision oncology to patients with cancer. Nat. Med. 28(4), 658–665 (2022).
   PubMed Web of Science ®Google Scholar
• Paranjape SM , Mogayzel PJ Jr . Cystic fibrosis in the era of precision medicine. Paediatric Respir. Rev. 25, 64–72 (2018).
   PubMed Web of Science ®Google Scholar
• 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).
   PubMed Web of Science ®Google Scholar
• 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
• 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).
   PubMed Web of Science ®Google Scholar
• Popejoy A , Fullerton S . Genomics is failing on diversity. Nature 538, 161–164 (2016).
   PubMed Web of Science ®Google Scholar
• 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
• Nature Medicine Editorial . Precision medicine needs an equity agenda. Nat. Med. 27, 737 (2021).
   PubMed Web of Science ®Google Scholar
• Hart TJ . The inverse care law. The Lancet 297, 405–412 (1971).
   Web of Science ®Google Scholar
• Power Asymmetries, participation, and the idea of personalised medicine. In: Handbook of Genomics, Health & Society. Prainsack B , Gibbon S , Hilgartner S , Lamoreaux J ( Eds). Routledge, London, UK, 212–220 (2018).
   Google Scholar
• Green S , Prainsack B , Sabatello M . Precision medicine and the problem of structural injustice. Med. Health Care and Philos 26, 433–450 (2023).
   PubMed Web of Science ®Google Scholar
• Tabery J . Tyranny of the Gene. Personalized Medicine and its Tread to Public Health. Penguin Random House (2023).
   Google Scholar
• 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).
   PubMed Web of Science ®Google Scholar
• Ebeling MF . Afterlives of Data: Life and Debt Under Capitalist Surveillance. University of California Press (2022).
   Google Scholar
• 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).
   PubMed Web of Science ®Google Scholar
• Tabery J . A revolution is coming to medicine. Who will it leave out? The New York Times (2023).
   Google Scholar
• 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).
   PubMed Web of Science ®Google Scholar
• 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).
   PubMed Web of Science ®Google Scholar
• Wadmann S , Hauge AM . Strategies of stratification: regulating market access in the era of personalized medicine. Soc. Stud. Sci. 51(4), 628–665 (2021).
   PubMed Web of Science ®Google Scholar
• 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
• Robbins R , Nolen S . A dilemma for governments: How to pay for million-dollar therapies. The New York Times (2023).
   Google Scholar
• 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
• 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
• Pope C . Drug.com . Why is Zolgensma so expensive? (2022). www.drugs.com/medical-answers/zolgensma-expensive-3552644/
   Google Scholar
• Wadmann S . Disease classification: a framework for analysis of contemporary developments in precision medicine. SSM Qual. Res. Health 3, 100217 (2023).
   Google Scholar
• Mazzucato M , Roy V . Rethinking value in health innovation: from mystifications towards prescriptions. J. Econ. Policy Reform. 22(2), 101–119 (2019).
   Web of Science ®Google Scholar
• 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 A , Strand R ( Eds). Cham, Springer, 45–60 (2022).
   Google Scholar
• Mingorance A . Drivers of orphan drug development. ACS Med. Chem. Lett. 9(10), 962–964 (2018).
   PubMed Web of Science ®Google Scholar
• Green S , Carusi A , Hoeyer K . Plastic diagnostics: the remaking of disease and evidence in personalized medicine. Soc. Sci. Med. 304, 112318 (2022).
   PubMed Web of Science ®Google Scholar
• Vogt H , Green S , Ekstrøm CT , Brodersen J . How precision medicine and screening with big data could increase overdiagnosis. BMJ 366, I5270 (2019).
   PubMedGoogle Scholar
• 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
• Bode AM , Dong Z . Recent advances in precision oncology research. NPJ Precis. Oncol. 2(1), 11 (2018).
   PubMedGoogle Scholar
• Vogt H , Hofmann B . How precision medicine changes medical epistemology: a formative case from Norway. J. Eval Clin. Prac. 28(6), 1205–1212 (2022).
   PubMed Web of Science ®Google Scholar
• 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 C , Bertolaso M ( Eds). Cham, Springer, 3–21 (2022).
   Google Scholar