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https://github.com/PennShenLab/Ethics_and_Policy_Resources_for_PennAITech


https://github.com/PennShenLab/Ethics_and_Policy_Resources_for_PennAITech

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# Ethics and Policy Resources for PennAITech



This collection of resources offers a comprehensive overview of key policies, initiatives, and literature resources related to various aspects of aging, dementia, and Alzheimer's disease. These resources address a wide range of topics, including informed consent, capacity, risk assessment, confidentiality, privacy, data governance, vulnerable populations, incidental findings, deception, liability, transparency, bias, human/machine interface, and FDA regulations.



The resources also cover both international and national frameworks, providing guidance for researchers, healthcare professionals, policymakers, and other stakeholders involved in the study, prevention, and treatment of aging, dementia, and Alzheimer's disease. These guidelines and regulations aim to ensure that research and practices in these areas adhere to the highest ethical standards, protect the rights and well-being of individuals affected by these conditions, and promote the responsible use of innovative technologies, such as artificial intelligence and digital health tools.



By examining these resources, you will gain valuable insights into the current landscape of policies and guidelines that govern research and practice in the fields of aging, dementia, and Alzheimer's disease. This knowledge can help you better understand the complex ethical and regulatory considerations that underpin efforts to improve the lives of those affected by these conditions and their caregivers.



## Policies

Below are a list of policies and guidelines related to various aspects of aging, dementia, and Alzheimer's disease, including consent, capacity, risk, confidentiality, privacy, data governance, vulnerable populations, incidental findings, deception, liability, transparency, bias, human/machine interface, and FDA regulations.

These resources provide important ethical and regulatory frameworks that guide research and practice related to aging, dementia, and Alzheimer's disease.



||Title|Description|Link|

|-|-|-|-|

|1|National Plan to Address Alzheimer's Disease (NPAAD)|A comprehensive plan by the US government to prevent and treat Alzheimer's disease and related dementias, including promoting research, improving care and services, and supporting caregivers.|https://aspe.hhs.gov/national-plans-address-alzheimers-disease|

|2|World Health Organization's Global Action Plan on the Public Health Response to Dementia 2017-2025|A global policy framework that guides countries in developing and implementing national dementia policies and plans.|https://www.who.int/publications/i/item/global-action-plan-on-the-public-health-response-to-dementia-2017---2025|

|3|G8 Dementia Summit Declaration|A 2013 declaration by G8 countries that led to the establishment of the World Dementia Council and committed to developing a cure or disease-modifying therapy for dementia by 2025.|https://www.gov.uk/government/publications/g8-dementia-summit-agreements|

|4|National Alzheimer's Project Act (NAPA)|A US federal law enacted in 2011 that mandated the creation of a national strategic plan to address Alzheimer's disease and related dementias, including research, care, and support.|https://aspe.hhs.gov/national-alzheimers-project-act|

|5|Dementia Friends|A UK government-led initiative that encourages individuals and organizations to learn more about dementia and take action to create dementia-friendly communities.|https://www.dementiafriends.org.uk/|

|6|Health Insurance Portability and Accountability Act (HIPAA) Privacy Rule|A US federal regulation that protects the privacy of individuals' health information and sets rules and limits on who can access and receive health information.|https://www.hhs.gov/hipaa/for-professionals/privacy/index.html|

|7|Common Rule (45 CFR 46)|A US federal policy that outlines the ethical guidelines for the protection of human subjects in research, including the role of Institutional Review Boards (IRBs), the definition of human subjects, and considerations for vulnerable populations.|https://www.hhs.gov/ohrp/regulations-and-policy/regulations/common-rule/index.html|

|8|General Data Protection Regulation (GDPR)|A European Union (EU) regulation that governs data protection and privacy, including aspects related to data governance, confidentiality, and privacy.|https://gdpr.eu/|

|9|Belmont Report|A foundational document in the field of research ethics that provides guidance on informed consent, risk assessment, and the protection of vulnerable populations.|https://www.hhs.gov/ohrp/regulations-and-policy/belmont-report/index.html|

|10|American Psychological Association's Ethical Principles of Psychologists and Code of Conduct|Guidelines that cover aspects related to informed consent, deception, confidentiality, privacy, and the return of results in psychological research.|https://www.apa.org/ethics/code/|

|11|FDA's Digital Health Innovation Action Plan|A plan that outlines the FDA's approach to ensuring the safety and effectiveness of digital health technologies, including AI algorithms and human/machine interfaces.|https://www.fda.gov/media/106331/download|



...



## Initiatives

||Title|Description|Link|

|-|-|-|-|

|1|Alzheimer's Disease Neuroimaging Initiative (ADNI)|An ongoing study focused on developing biomarkers for Alzheimer's disease using imaging and other data. It encourages data sharing and collaboration among researchers.| http://adni.loni.usc.edu/|

|2|National Plan to Address Alzheimer's Disease (NPAAD)| A comprehensive plan by the US government to prevent and treat Alzheimer's disease and related dementias.|https://aspe.hhs.gov/collaborations-committees-advisory-groups/napa/napa-documents/napa-national-plan|

|3|Global Dementia Observatory (GDO)|The monitoring and accountability mechanism for the Global action plan on the public response to dementia 2017-25. It collates data from WHO Member States on 35 key dementia indicators to strengthen countries’ ability to respond to the needs of people with dementia, their carers and families. |https://www.who.int/data/gho/data/themes/global-dementia-observatory-gdo|

|4|EU Joint Programme on Neurodegenerative Disease Research (JPND)|A European initiative that supports collaborative research projects focused on neurodegenerative diseases, including Alzheimer's.|http://www.neurodegenerationresearch.eu/|

|5|Dementia Friendly America|A national initiative that fosters dementia-friendly communities through education, support, and technology.|https://www.dfamerica.org/|

|6|National Institute on Aging's Alzheimer's Disease Data Storage Site (NIAGADS)|A data repository that promotes data sharing and collaboration among researchers studying Alzheimer's disease and related dementias.|https://www.niagads.org/|

|7|Dementia Discovery Fund (DDF)|A venture capital fund that invests in novel science and technology to create innovative new treatments for dementia.|https://theddfund.com/|



...



## Literatures



||Title|Description|Link|

|-|-|-|-|

|1|Public Policy & Aging Report|It explores policy issues generated by the aging of society. Each thematic issue is designed to stimulate debate, highlight emerging concerns, and propose alternative policy options. Recent issues have addressed legal and policy issues associated with end-of-life care; technology and aging; income security among older populations of color; Medicare reform; and elder abuse and neglect. The audience consists of decision-makers in the public and private sectors, advisors and staff to those decision-makers, program administrators, researchers, students, and the interested public. Articles in each issue are informed, to the point, and provocative. Authors are drawn from the leadership ranks of the policy, practice, and research communities. In the Public Policy & Aging Report, these authors are afforded the opportunity to engage readers in a more timely and pressing manner than is afforded through most other publication formats. Each issue contains an article in the Editor's Choice series, representing a paper that the editor sees as providing an especially significant contribution to the field of gerontology. These articles are available free to non-subscribers.|https://academic.oup.com/ppar?login=true|

|2|Ethical Considerations Regarding the Use of Smart Home Technologies for Older Adults: An Integrative Review|The purpose of this review is to provide an overview of ethical considerations and the evidence on these ethical issues based on an integrative literature review with regard to the utilization of smart home technologies by older adults and their family members.|https://connect.springerpub.com/content/sgrarnr/34/1/155|

|3|Aging 4.0? Rethinking the ethical framing of technology-assisted eldercare|It aims to outline how existing ethical frameworks need to be extended or reconsidered to capture the ethical issues posed by technological developments regarding care for older people.|https://link.springer.com/article/10.1007/s40656-021-00447-x|

|4|Ethical challenges related to assistive product access for older adults and adults living with a disability: a scoping review protocol|The purpose of this scoping review is to identify and map the literature pertaining to ethical challenges related to assistive product access and procurement to inform policy development.	|https://systematicreviewsjournal.biomedcentral.com/articles/10.1186/s13643-017-0419-5|

|5|Claude D. Pepper Older Americans Independence Centers (OAICs)|The Claude D. Pepper Older Americans Independence Centers (OAIC) program was established in honor of the late Representative to establish centers of excellence in geriatrics research and research career development to increase scientific knowledge leading to better ways to maintain or restore independence in older persons.|https://www.peppercenter.org/|

|6|Spring Bridge on Technologies for Aging|Spring Bridge on Technologies for Aging is a publication by the National Academy of Engineering (NAE) that was released on March 15, 2019. It is Volume 49 Issue 1 of their publication series. The issue discusses technologies that can facilitate both independence and quality of life for older adults.	|https://www.nae.edu/205212/Spring-Bridge-on-Technologies-for-Aging|

|7|A systematic review of ethical and legal issues in elder care|This literature review aims to identify research focusing on ethical and legal issues in geriatric care, in order to give nurses and other health care workers an overview of existing grievances and possible solutions to take care of old patients in a both ethical and legally correct way.|https://journals.sagepub.com/doi/10.1177/0969733020921488?url_ver=Z39.88-2003&rfr_id=ori:rid:crossref.org&rfr_dat=cr_pub%20%200pubmed|

|8|Improving Older People’s Lives Through Digital Technology and Practices|This set of articles contributes to knowledge and understanding of how digital technology and practices play a role in improving the lives of older people in contemporary society as well as setting the grounding for future ageing populations. The Aging and Technology special issue comprises twelve papers from international scholars across the USA, the UK, Italy, the Netherlands, France and Canada.	|https://journals.sagepub.com/doi/full/10.1177/23337214211036255|

|9|Technology-driven solutions to prompt conversation, aid communication and support interaction for people with dementia and their caregivers: a systematic literature review|The aim of this review is to provide a comprehensive description of technology-driven interventions for PwD and their conversation partners to enhance communication and the quality of their relationship. By focusing on “conversation support” – an area of social health in dementia caregiving which at first glance might appear intangible – this review makes a unique contribution to an area that has so far mostly remained in the background of dementia research.	|https://bmcgeriatr.biomedcentral.com/articles/10.1186/s12877-021-02105-0#Abs1|

|10|Shaping technologies for older adults with and without dementia: Reflections on ethics and preferences|This study addresses the relevance of privacy, vulnerability and preservation of autonomy as key factors when involving older individuals as target users for information and communication technology research and development. They provide explanatory examples of ethical issues involved in the particular case of developing different types of information and communication technology for older people (from robotics to serious games), what previously performed research tells us about older adults’ preferences and wishes for information and communication technology and what steps should be taken into consideration in the near future.|https://journals.sagepub.com/doi/10.1177/1460458219899590?url_ver=Z39.88-2003&rfr_id=ori:rid:crossref.org&rfr_dat=cr_pub%20%200pubmed|