Alzheimer’s in the modern age: Ethical challenges in the use of digital monitoring to identify cognitive changes

References

• Alzheimer’s Association. 2021. 2021 Alzheimer’s disease facts and figures. Alzheimer’s Dementia. 2021;17(3):327–406. doi:10.1002/alz.12328.
   PubMed Web of Science ®Google Scholar
• Knopman DS, Amieva H, Petersen RC, Chételat G, Holtzman DM, Hyman BT, Nixon RA, Jones DT. Alzheimer disease. Nat Rev Dis Primers. 2021;7(1):1–21. doi:10.1038/s41572-021-00269-y.
   PubMed Web of Science ®Google Scholar
• Dubois B, Hampel H, Feldman HH, Scheltens P, Aisen P, Andrieu S, Bakardjian H, Benali H, Bertram L, Blennow K, et al. 2016. Preclinical Alzheimer’s disease: Definition, natural history, and diagnostic criteria. Alzheimers Dement. 12(3):292–323. doi:10.1016/j.jalz.2016.02.002.
   PubMed Web of Science ®Google Scholar
• Piau A, Wild K, Mattek N, Kaye J. Current state of digital biomarker technologies for real-life, home-based monitoring of cognitive function for mild cognitive impairment to mild Alzheimer disease and implications for clinical care: systematic review. J Med Internet Res. 2019;21(8):e12785. doi:10.2196/12785.
   PubMed Web of Science ®Google Scholar
• Harms RL, Ferrari A, Meier IB, Martinkova J, Santus E, Marino N, Cirillo D, Mellino S, Catuara Solarz S, Tarnanas I, et al. Digital biomarkers and sex impacts in Alzheimer’s disease management — potential utility for innovative 3P medicine approach. EPMA J. 2022;13(2):299–313. doi:10.1007/s13167-022-00284-3.
   PubMed Web of Science ®Google Scholar
• Bradford A, Kunik ME, Schulz P, Williams SP, Singh H. Missed and delayed diagnosis of dementia in primary care: prevalence and contributing factors. Alzheimer Dis Assoc Disord. 2009;23(4):306–14. doi:10.1097/WAD.0b013e3181a6bebc.
   PubMed Web of Science ®Google Scholar
• Mahase E. Alzheimer’s disease: Lecanemab gets full FDA approval and black box safety warning. BMJ. 2023;382:1580. doi:10.1136/bmj.p1580.
   PubMedGoogle Scholar
• Biogen to Launch Pioneering Study to Develop Digital Biomarkers of Cognitive Health Using Apple Watch and iPhone | Biogen. [accessed 2022 Dec 7]. https://investors.biogen.com/news-releases/news-release-details/biogen-launch-pioneering-study-develop-digital-biomarkers.
   Google Scholar
• Announcement | Evidation and Merck. [accessed 2022 Dec 7]. https://evidation.com/resources/evidation-collaborates-with-merck-on-digital-monitoring-study-for-alzheimers-disease-2.
   Google Scholar
• Smith A 2020. Dementia charity spearheads global initiative to use wearables to revolutionise disease detection. Alzheimer’s Research UK. [accessed 2022 Dec 7]. https://www.alzheimersresearchuk.org/dementia-charity-spearheads-global-initiative-to-use-wearables-to-revolutionise-disease-detection/.
   Google Scholar
• What Is Mild Cognitive Impairment? | National Institute on Aging. [accessed 2023 Jan 20]. http://www.nia.nih.gov/alzheimers-dementias/mild-cognitive-impairment.
   Google Scholar
• Abernethy A, Adams L, Barrett M, Bechtel C, Brennan P, Butte A, Faulkner J, Fontaine E, Friedhoff S, Halamka J, et al. The promise of digital health: then, Now, and the future. NAM Perspectives. 2022 Jun 27;6:22. accessed 2023 Jan 20. doi: 10.31478/202206e
   Google Scholar
• Cote AC, Phelps RJ, Kabiri NS, Bhangu JS, Thomas K. Evaluation of wearable technology in dementia: a systematic review and meta-analysis. Front Med. 2021;7. Kip. accessed 2023 Jan 20. https://www.frontiersin.org/articles/10.3389/fmed.2020.501104.
   Web of Science ®Google Scholar
• Kourtis LC, Regele OB, Wright JM, Jones GB. Digital biomarkers for Alzheimer’s disease: the mobile/wearable devices opportunity. NPJ Digital Med. 2019;2(1):1–9. doi:10.1038/s41746-019-0084-2.
   PubMedGoogle Scholar
• Öhman F, Hassenstab J, Berron D, Schöll M, Papp KV. Current advances in digital cognitive assessment for preclinical Alzheimer’s disease. Alz & Dem Diag Ass & Dis Mo. 2021;13(1):e12217. doi:10.1002/dad2.12217.
   PubMedGoogle Scholar
• Rosin ER, Blasco D, Pilozzi AR, Yang LH, Huang X. A Narrative Review of Alzheimer’s Disease Stigma. J Alzheimers Dis. 2020;78(2):515–28. doi:10.3233/JAD-200932.
   PubMed Web of Science ®Google Scholar
• Nicholas LH, Langa KM, Bynum JPW, Hsu JW. Financial presentation of Alzheimer disease and related dementias. JAMA Intern Med. 2021;181(2):220–27. doi:10.1001/jamainternmed.2020.6432.
   PubMed Web of Science ®Google Scholar
• Boyle PA, Yu L, Schneider JA, Wilson RS, Bennett DA. Scam awareness related to incident Alzheimer dementia and mild cognitive impairment: a prospective cohort study. Ann Intern Med. 2019;170(10):702–09. doi:10.7326/M18-2711.
   PubMed Web of Science ®Google Scholar
• Pimentel B How banks fight fraud with behavioral analytics - protocol. [accessed 2023 Jan 20]. https://www.protocol.com/fintech/behavioral-analytics-bank-fraud-detection.
   Google Scholar
• Lussier M, Aboujaoudé A, Couture M, Moreau M, Laliberté C, Giroux S, Pigot H, Gaboury S, Bouchard K, Belchior P, et al. Using ambient assisted living to monitor older adults with Alzheimer disease: single-case study to validate the monitoring report. JMIR Med Inform. 2020;8(11):e20215. doi:10.2196/20215.
   PubMed Web of Science ®Google Scholar
• Nakaoku Y, Ogata S, Murata S, Nishimori M, Ihara M, Iihara K, Takegami M, Nishimura K. AI-Assisted in-house power monitoring for the detection of cognitive impairment in older adults. Sensors (Basel). 2021;21(18):6249. doi:10.3390/s21186249.
   PubMed Web of Science ®Google Scholar
• Brown LB, Ott BR. Driving and dementia: a review of the literature. J Geriatr Psychiatry Neurol. 2004;17(4):232–40. doi:10.1177/0891988704269825.
   PubMed Web of Science ®Google Scholar
• Davis JD, Papandonatos GD, Miller LA, Hewitt SD, Festa EK, Heindel WC, Ott BR. Road test and naturalistic driving performance in healthy and cognitively impaired older adults: does environment matter? J Am Geriatr Soc. 2012;60(11):2056–62. doi:10.1111/j.1532-5415.2012.04206.x.
   PubMed Web of Science ®Google Scholar
• Kostyniuk LP, Molnar LJ. Self-regulatory driving practices among older adults: health, age and sex effects. Accident Anal Prev. 2008;40(4):1576–80. doi:10.1016/j.aap.2008.04.005.
   PubMed Web of Science ®Google Scholar
• Allison SL, Fagan AM, Morris JC, Head D. Spatial navigation in preclinical Alzheimer’s disease. J Alzheimers Dis. 2016;52(1):77–90. doi:10.3233/JAD-150855.
   PubMed Web of Science ®Google Scholar
• Coughlan G, Laczó J, Hort J, Minihane A-M, Hornberger M. Spatial navigation deficits — overlooked cognitive marker for preclinical Alzheimer disease? Nat Rev Neurol. 2018;14(8):496–506. doi:10.1038/s41582-018-0031-x.
   PubMed Web of Science ®Google Scholar
• Bayat S, Babulal GM, Schindler SE, Fagan AM, Morris JC, Mihailidis A, Roe CM. GPS driving: a digital biomarker for preclinical Alzheimer disease. Alz Res Therapy. 2021;13(1):115. doi:10.1186/s13195-021-00852-1.
   PubMed Web of Science ®Google Scholar
• Roe CM, Stout SH, Rajasekar G, Ances BM, Jones JM, Head D, Benzinger TLS, Williams MM, Davis JD, Ott BR, et al. A 2.5-year longitudinal assessment of naturalistic driving in preclinical Alzheimer’s disease. J Alzheimers Dis. 2019;68(4):1625–33. doi:10.3233/JAD-181242.
   PubMed Web of Science ®Google Scholar
• How Do Those Car Insurance Tracking Devices Work? US News & World Report. [accessed 2023 Jan 20]. www.usnews.com/insurance/auto/how-do-those-car-insurance-tracking-devices-work.
   Google Scholar
• Konig A, Satt A, Sorin A, Hoory R, Derreumaux A, David R, Robert PH. Use of speech analyses within a mobile application for the assessment of cognitive impairment in elderly people. Curr Alzheimer Res. 2018;15(2):120–29. doi:10.2174/1567205014666170829111942.
   PubMed Web of Science ®Google Scholar
• König A, Satt A, Sorin A, Hoory R, Toledo-Ronen O, Derreumaux A, Manera V, Verhey F, Aalten P, Robert PH, et al. Automatic speech analysis for the assessment of patients with predementia and Alzheimer’s disease. Alz & Dem Diag Ass & Dis Mo. 2015;1(1):112–24. doi:10.1016/j.dadm.2014.11.012.
   PubMedGoogle Scholar
• Verfaillie SCJ, Witteman J, Slot RER, Pruis IJ, Vermaat LEW, Prins ND, Schiller NO, van de Wiel M, Scheltens P, van Berckel BNM, et al. 2019. High amyloid burden is associated with fewer specific words during spontaneous speech in individuals with subjective cognitive decline. Neuropsychologia. 131:184–92. doi: 10.1016/j.neuropsychologia.2019.05.006.
   PubMed Web of Science ®Google Scholar
• Robin J, Harrison JE, Kaufman LD, Rudzicz F, Simpson W, Yancheva M. Evaluation of speech-based digital biomarkers: review and recommendations. Digit Biomark. 2020;4(3):99–108. doi:10.1159/000510820.
   PubMedGoogle Scholar
• Lang L, Clifford A, Wei L, Zhang D, Leung D, Augustine G, Danat IM, Zhou W, Copeland JR, Anstey KJ, et al. 2017. Prevalence and determinants of undetected dementia in the community: a systematic literature review and a meta-analysis. BMJ Open. 7(2):e011146. doi:10.1136/bmjopen-2016-011146.
   PubMed Web of Science ®Google Scholar
• Raman R, Aisen P, Carillo MC, Detke M, Grill JD, Okonkwo OC, Rivera-Mindt M, Sabbagh M, Vellas B, Weiner M, et al. Tackling a major deficiency of diversity in alzheimer’s disease therapeutic trials: an CTAD task force report. J Prev Alz Dis. 2022;9(3):388–92. doi:10.14283/jpad.2022.50.
   PubMed Web of Science ®Google Scholar
• Wilkins CH, Schindler SE, Morris JC. Addressing health disparities among minority populations: why clinical trial recruitment is not enough. JAMA Neurol. 2020;77(9):1063–64. doi:10.1001/jamaneurol.2020.1614.
   PubMed Web of Science ®Google Scholar
• 2021 Alzheimer’s disease facts and figures. 2021 Alzheimer’s disease facts and figures. Alzheimer’s Dementia. 2021;17(3):327–406. doi:10.1002/alz.12328.
   PubMed Web of Science ®Google Scholar
• Lin P-J, Daly AT, Olchanski N, Cohen JT, Neumann PJ, Faul JD, Fillit HM, Freund KM. Dementia diagnosis disparities by race and ethnicity. Med Care. 2021;59(8):679–86. doi:10.1097/MLR.0000000000001577.
   PubMed Web of Science ®Google Scholar
• Zou J, Schiebinger L. AI can be sexist and racist — it’s time to make it fair. Nature. 2018;559(7714):324–26. doi:10.1038/d41586-018-05707-8.
   PubMedGoogle Scholar
• Wetsman N 2020 Oct 1. The Apple Watch heart monitor sends too many people to the doctor. The Verge. [accessed 2023 Jan 20]. https://www.theverge.com/2020/10/1/21496813/apple-watch-heart-monitor-ekg-false-positive.
   Google Scholar
• Liu JL, Hlavka JP, Hillestad R, Mattke S 2017. Assessing the preparedness of the U.S. Health care System infrastructure for an Alzheimer’s treatment. RAND Corporation. [accessed 2023 Jan 23]. https://www.rand.org/pubs/research_reports/RR2272.html.
   Google Scholar
• Charalambous AP, Pye A, Yeung WK, Leroi I, Neil M, Thodi C, Dawes P. Tools for app- and web-based self-testing of cognitive impairment: systematic search and Evaluation. J Med Internet Res. 2020;22(1):e14551. doi:10.2196/14551.
   PubMed Web of Science ®Google Scholar
• Largent Emily A, Stites SD, Harkins K, Karlawish J. ‘That would be dreadful’: the ethical, legal, and social challenges of sharing your Alzheimer’s disease biomarker and genetic testing results with others. J Law Biosci. 2021;8(1):lsab004. doi:10.1093/jlb/lsab004.
   PubMed Web of Science ®Google Scholar
• Erickson CM, Chin NA, Johnson SC, Gleason CE, Clark LR. Disclosure of preclinical Alzheimer’s disease biomarker results in research and clinical settings: why, how, and what we still need to know. Alz & Dem Diag Ass & Dis Mo. 2021;13(1):e12150. doi:10.1002/dad2.12150.
   PubMedGoogle Scholar
• Harkins K, Sankar P, Sperling R, Grill JD, Green RC, Johnson KA, Healy M, Karlawish J. Development of a process to disclose amyloid imaging results to cognitively normal older adult research participants. Alzheimers Res Ther. 2015;7(1):26. doi:10.1186/s13195-015-0112-7.
   PubMedGoogle Scholar
• Largent Emily A, Bhardwaj T, Abera M, Stites SD, Harkins K, Lerner AJ, Bradbury AR, Karlawish J. Disclosing genetic risk of Alzheimer’s disease to cognitively unimpaired older adults: findings from the study of knowledge and reactions to APOE testing (SOKRATES II). J Alzheimers Dis. 2021;84(3):1015–28. doi:10.3233/JAD-210675.
   PubMed Web of Science ®Google Scholar
• Erickson CM, Clark LR, Ketchum FB, Chin NA, Gleason CE, Largent EA. Implications of preclinical Alzheimer’s disease biomarker disclosure for US policy and society. Alz & Dem Diag Ass & Dis Mo. 2022;14(1):e12339. doi:10.1002/dad2.12339.
   PubMedGoogle Scholar
• Zallen DT. Alzheimer’s disease: risk tests and the medical record. J Alzheimers Dis. 2022;90(3):997–99. doi:10.3233/JAD-220584.
   PubMed Web of Science ®Google Scholar
• Skerrett P 2019. 23andMe had devastating news about my health. I wish a person had delivered it. STAT. [accessed 2023 Jan 20]. https://www.statnews.com/2019/08/08/23andme-genetic-test-revealed-high-cancer-risk/.
   Google Scholar
• Messner DA. Informed Choice in Direct-to-Consumer Genetic Testing for Alzheimer and Other Diseases: Lessons from Two Cases. New Genet Soc. 2011;30(1):59–72. doi:10.1080/14636778.2011.552300.
   Web of Science ®Google Scholar
• Coravos A, Khozin S, Mandl KD. Developing and adopting safe and effective digital biomarkers to improve patient outcomes. npj Digit Med. 2019;2(1):1–5. doi:10.1038/s41746-019-0090-4.
   PubMedGoogle Scholar
• Gold M, Amatniek J, Carrillo MC, Cedarbaum JM, Hendrix JA, Miller BB, Robillard JM, Rice JJ, Soares H, Tome MB, et al. Digital technologies as biomarkers, clinical outcomes assessment, and recruitment tools in Alzheimer’s disease clinical trials. A&D Transl Re Clin Interv. 2018;4(1):234–42. doi:10.1016/j.trci.2018.04.003.
   PubMedGoogle Scholar
• Martinez-Martin N, Insel TR, Dagum P, Greely HT, Cho MK. Data mining for health: staking out the ethical territory of digital phenotyping. NPJ Digital Med. 2018;1(1):1–5. doi:10.1038/s41746-018-0075-8.
   PubMedGoogle Scholar
• Nguyen T, Li X. Understanding public-stigma and self-stigma in the context of dementia: a systematic review of the global literature. Dementia. 2020;19(2):148–81. doi:10.1177/1471301218800122.
   PubMedGoogle Scholar
• Stites SD, Gill J, Largent EA, Harkins K, Sankar P, Krieger A, Karlawish J. The relative contributions of biomarkers, disease modifying treatment, and dementia severity to Alzheimer’s stigma: a vignette-based experiment. Social Sci Med. 2021;292:114620. doi:10.1016/j.socscimed.2021.114620.
   PubMed Web of Science ®Google Scholar
• The Genetic Information Nondiscrimination Act of 2008. US EEOC. [accessed 2023 Jan 23]. https://www.eeoc.gov/statutes/genetic-information-nondiscrimination-act-2008.
   Google Scholar
• Greely HT. Predicting Alzheimer’s disease. Elder Law J. 2021;28:110.
   Google Scholar
• Rothstein MA, Rothstein L. How genetics might affect real property rights: currents in contemporary bioethics. J Law Med Ethics. 2016;44(1):216–21. doi:10.1177/1073110516644212.
   PubMed Web of Science ®Google Scholar
• Saeed SA, Masters RM. Disparities in health care and the digital divide. Curr Psychiatry Rep. 2021;23(9):61. doi:10.1007/s11920-021-01274-4.
   PubMed Web of Science ®Google Scholar
• Yao R, Zhang W, Evans R, Cao G, Rui T, Shen L. Inequities in health care services caused by the adoption of digital health technologies: scoping review. J Med Internet Res. 2022;24(3):e34144. doi:10.2196/34144.
   PubMed Web of Science ®Google Scholar
• Crouch E, Gordon NP. Prevalence and factors influencing use of Internet and electronic health resources by middle-aged and older adults in a US health plan population: cross-sectional survey study. JMIR Aging. 2019;2(1):e11451. doi:10.2196/11451.
   PubMedGoogle Scholar
• Xu WY, Jung J, Retchin SM, Li Y, Roy S. Rural-Urban Disparities in Diagnosis of Early-Onset Dementia. JAMA Netw Open. 2022;5(8):e2225805. doi:10.1001/jamanetworkopen.2022.25805.
   PubMed Web of Science ®Google Scholar
• Hellmuth J, Rabinovici GD, Miller BL. The rise of pseudomedicine for dementia and brain health. JAMA. 2019;321(6):543–44. doi:10.1001/jama.2018.21560.
   PubMed Web of Science ®Google Scholar
• Prince AER 2022 Oct 10. I tried to keep my pregnancy secret. The Atlantic. [accessed 2023 Jan 20]. https://www.theatlantic.com/ideas/archive/2022/10/can-you-hide-your-pregnancy-era-big-data/671692/.
   Google Scholar
• Han SD, Boyle PA, James BD, Yu L, Bennett DA. Mild cognitive impairment and susceptibility to scams in old age. J Alzheimers Dis. 2016;49(3):845–51. doi:10.3233/JAD-150442.
   PubMed Web of Science ®Google Scholar
• Lachs MS, Han SD. Age-associated financial vulnerability: an emerging public health issue. Ann Intern Med. 2015;163(11):877–78. doi:10.7326/M15-0882.
   PubMed Web of Science ®Google Scholar
• Initiative EJ. 2021. 2021 IC3ElderFraudReport.: 23.
   Google Scholar
• Burnes D, Henderson CR, Sheppard C, Zhao R, Pillemer K, Lachs MS. Prevalence of financial fraud and scams among older adults in the United States: a systematic review and meta-analysis. Am J Public Health. 2017;107(8):e13–e21. doi:10.2105/AJPH.2017.303821.
   PubMed Web of Science ®Google Scholar
• Boyne SM. Data protection in the United States. Am J Comp Law. 2018;66(suppl_1):299–343. doi:10.1093/ajcl/avy016.
   Google Scholar
• Kerry CF 2018. Why protecting privacy is a losing game today—and how to change the game. Brookings. [accessed 2023 Jan 20]. https://www.brookings.edu/research/why-protecting-privacy-is-a-losing-game-today-and-how-to-change-the-game/.
   Google Scholar