Ethical conditions for research with the elderly: a narrative review [Version 1; Peer Review - In Progress]
DOI:
https://doi.org/10.56294/saludcyt2023219Keywords:
Ethics in Research, Aged, ElderlyAbstract
Introduction: the population aging raises the need for the inclusion of older people in research, and therefore, the review of ethical guidelines that grant protection to this age group, especially in conditions of vulnerability.
Objective: to find out about the ethical conditions involved in research with older people and the protection they should be afforded as research subjects.
Methods: narrative review of 15 original articles published between 2001 and 2021, indexed in the PUBMED, Web of Science, CINAHL, and SCOPUS databases. The descriptors used were Ethics in Research and Aged/ Elderly.
Results: the main findings point to the poverty of research on aging issues and unjustified discrimination in the participation of older people in clinical studies. An update is provided on the ethical conditions for research on older people, according to the requirements set out by Emanuel.
Conclusions: the need to include older people in clinical research is imperative, for which it is necessary to integrate advances in Chilean legislation that allow the participation of this age group in different situations of vulnerability while maintaining the conditions of protection contemplated in international ethical guidelines and agreements. Participatory research and methods that include the community can be an opportunity to approach research within a framework of respect and citizen education
References
1. Aggarwal P, Woolford SJ, Patel HP. Multi-Morbidity and Polypharmacy in Older People: Challenges and Opportunities for Clinical Practice. Geriatrics. 2020 28;5(4):85.
2. Ministerio de Desarrollo Social y Familia. Informe de Desarrollo Social 2021. Santiago, Chile; 2021.
3. Struckmann V, Leijten FRMM, van Ginneken E, Kraus M, Reiss M, Spranger A, et al. Relevant models and elements of integrated care for multi-morbidity: Results of a scoping review. Health Policy. 2018;122(1):23–35. https://doi.org/10.1016/j.healthpol.2017.08.008.
4. World Medical Association. World Medical Association Declaration of Helsinki: ethical principles for medical research involving human subjects. JAMA 2013;310:2191-4. https://doi.org/10.1001/jama.2013.281053.
5. Council for International Organizations of Medical Sciences. International Ethical Guidelines for Health-related Research Involving Humans Prepared by the Council for International Organizations of Medical Sciences (CIOMS) in collaboration with the World Health Organization (WHO). Ginebra, Suiza; 2016.
6. Zúñiga C, Zúñiga-Hernández J, Zúñiga C, Zúñiga-Hernández J. Excepciones al uso del consentimiento informado en investigación: ¿cuándo es esto posible en Chile? Revista médica de Chile. 2019;147(8):1029–35. http://dx.doi.org/10.4067/S0034-98872019000801029.
7. Ries NM. Ethics, Health Research, and Canada’s Aging Population. Canadian Journal on Aging / La Revue canadienne du vieillissement. 2010;29(4):577–80. https://doi.org/10.1017/s0714980810000565.
8. İlgili Ö, Arda B, Munir K. Ethic in Geriatric Medicine Reseach. Turk Geriatri Derg. 2014;17(2):188.
9. Page MJ, McKenzie JE, Bossuyt PM, Boutron I, Hoffmann TC, Mulrow CD, et al. The PRISMA 2020 statement: an updated guideline for reporting systematic reviews. BMJ. 2021. https://doi.org/10.1136/bmj.n71.
10. Emanuel E, Wendler D, Grady C. What makes clinical research ethical? JAMA. 2000 May 24;283(20):2701–11. https://doi.org/10.1001/jama.283.20.2701.
11. Zubair M, Victor C. Exploring gender, age, time and space in research with older Pakistani Muslims in the United Kingdom: formalised research ‘ethics’ and performances of the public/private divide in ‘the field.’ Ageing Soc. 2015;35(5):961–85. https://doi.org/10.1017/s0144686x14001378.
12. Lichtner V. The Everyday Ethics of Field Work Research with Vulnerable Patients. Studies in Health Technology and Informatics. 2014;205:813–7. http://dx.doi.org/10.3233/978-1-61499-432-9-813.
13. Dunn LB, Misra S. Research Ethics Issues in Geriatric Psychiatry. The Psychiatric clinics of North America. 2009;32(2):395. https://doi.org/10.1016/j.psc.2009.03.007.
14. Slaughter S, Cole D, Jennings E, Reimer M. Consent and assent to participate in research from people with dementia. Nurs Ethics. 2007;14(1):27–40. https://doi.org/10.1177/0969733007071355.
15. Good G. Ethics in research with older, disabled individuals. International Journal of Rehabilitation Research. 2001;24(3):165–70. https://doi.org/10.1097/00004356-200109000-00001.
16. Ries N, Mansfield E, Sanson-Fisher R. Planning Ahead for Dementia Research Participation: Insights from a Survey of Older Australians and Implications for Ethics, Law and Practice. Journal of bioethical inquiry. 2019;16(3):415–29. https://doi.org/10.1007/s11673-019-09929-x.
17. Adamis D, Treloar A, Martin FC, Macdonald AJD. Ethical Research in Delirium: Arguments for Including Decisionally Incapacitated Subjects. Science and Engineering Ethics 2009;16(1):169–74. https://doi.org/10.1007/s11948-009-9120-y.
18. Kim S, Kim H, McCallum C, Tariot P. What do people at risk for Alzheimer disease think about surrogate consent for research? Neurology. 2005;65(9):1395–401. https://doi.org/10.1212/01.wnl.0000183144.61428.73.
19. Peterson G, Wallin A. Alzheimer disease ethics--informed consent and related issues in clinical trials: results of a survey among the members of the Research Ethics Committees in Sweden. International psychogeriatrics. 2003;15(2):157–70. https://doi.org/10.1017/s1041610203008846.
20. Corneli A, Perry B, Collyar D, Powers JH, Farley JJ, Calvert SB, et al. Assessment of the Perceived Acceptability of an Early Enrollment Strategy Using Advance Consent in Health Care–Associated Pneumonia. JAMA Network Open. 2018;1(8):e185816–e185816. https://doi.org/10.1001/jamanetworkopen.2018.5816.
21. Brody H, Croisant S, Crowder J, Banda J. Ethical issues in patient-centered outcomes research and comparative effectiveness research: a pilot study of community dialogue. Journal of empirical research on human research ethics : JERHRE. 2015;10(1):22–30. https://doi.org/10.1177/1556264614568426.
22. Battistuzzi L, Papadopoulos C, Hill T, Castro N, Bruno B, Sgorbissa A. Socially Assistive Robots, Older Adults and Research Ethics: The Case for Case-Based Ethics Training. International Journal of Social Robotics 2020;13(4):647-659. https://doi.org/10.1007/s12369-020-00652-x.
23. Cruz-Jentoft A, Gutiérrez B. Upper age limits in studies submitted to a research ethics committee. Aging clinical and experimental research. 2010;22(2):175–8. https://doi.org/10.1007/bf03324793.
24. Barros Urzua J, Zamorano Pichard P, Varela Yuraszeck T, Irazoqui Soto E, Tellez Tellez A. Cambios en el modelo de atención de personas con multimorbilidad crónica: una revisión narrativa. ARS MEDICA Revista de Ciencias Médicas. 2019;44(4):35-40. https://doi.org/10.11565/arsmed.v44i4.1569.
25. Aggarwal SK, Carter GT, Sullivan MD, Zumbrunnen C, Morrill R, Mayer JD. Prospectively Surveying Health-Related Quality of Life and Symptom Relief in a Lot-Based Sample of Medical Cannabis-Using Patients in Urban Washington State Reveals Managed Chronic Illness and Debility. American Journal of Hospice and Palliative Medicine. 2013;30(6):523–31. https://doi.org/10.1177/1049909112454215.
26. Kottow M. Anotaciones sobre vulnerabilidad. Revista Redbioética / UNESCO 2011;2:91-5
Published
Issue
Section
License
Copyright (c) 2023 Beatriz Carrasco Diaz , Elizabeth Solis Albanese (Author)

This work is licensed under a Creative Commons Attribution 4.0 International License.
The article is distributed under the Creative Commons Attribution 4.0 License. Unless otherwise stated, associated published material is distributed under the same licence.