“I don’t want to be Henrietta Lacks”: diverse patient perspectives on donating biospecimens for precision medicine research

Techniques to Identify Themes

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Resolving Individuals Contributing Trace Amounts of DNA to Highly Complex Mixtures Using High-Density SNP Genotyping Microarrays

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Grounded Theory in Practice

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Federal Policy for the Protection of Human Subjects

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The Havasupai Indian tribe case--lessons for research involving stored biologic samples.

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Genomic Justice for Native Americans: Impact of the Havasupai Case on Genetic Research

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Structural racism in precision medicine: leaving no one behind

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Patients’ and professionals’ views related to ethical issues in precision medicine: a mixed research synthesis

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Towards equitable and trustworthy genomics research

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Patient Perspectives and Preferences for Consent in the Digital Health Context: State-of-the-art Literature Review

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Structural Racism in the COVID-19 Pandemic: Moving Forward

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Brain organoids, consciousness, ethics and moral status

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Predictors of Participation in Clinical Research

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Obligations of the “Gift”: Reciprocity and Responsibility in Precision Medicine

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Taking an antiracist posture in scientific publications in human genetics and genomics

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Patients' perspectives related to ethical issues and risks in precision medicine: a systematic review

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A Review of African Americans’ Beliefs and Attitudes About Genomic Studies: Opportunities for Message Design

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Reimagining research ethics to include environmental sustainability: a principled approach, including a case study of data-driven health research

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Genomics governance: advancing justice, fairness and equity through the lens of the African communitarian ethic of Ubuntu

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Exploring potential drivers of patient engagement with their health data through digital platforms: A scoping review

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Tomosynthesis mammographic Imaging Screening Trial (TMIST): An Invitation and Opportunity for the National Medical Association Community to Shape the Future of Precision Screening for Breast Cancer

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Identifying the nature and extent of public and donor concern about the commercialisation of biobanks for genomic research

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The Intersection of Race, Racism, and Child and Adolescent Health

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The ethical challenges of diversifying genomic data: A qualitative evidence synthesis

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Public engagement with genomics

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Incorporating Biobank Consent into a Healthcare Setting: Challenges for Patient Understanding

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“I’m a Little More Trusting”: Components of Trustworthiness in the Decision to Participate in Genomics Research for African Americans

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Learning from Black/African American Participants: Applying the Integrated Behavioral Model to Assess Recruitment Strategies for a Glaucoma Genetic Study

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Biobank Participants’ Attitudes Toward Data Sharing and Privacy: The Role of Trust in Reducing Perceived Risks

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Unintended effects of open data policy in online behavioral research: An experimental investigation of participants’ privacy concerns and research validity

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Adapting a conceptual framework to engage diverse stakeholders in genomic/precision medicine research

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The Ethics of Consent in a Shifting Genomic Ecosystem

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Recruiting diversity where it exists: The Alabama Genomic Health Initiative

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African American Nurses' Perspectives on Genomic Medicine Research

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Disembodied Brains

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Preface: Precision Medicine Approaches to Health Disparities Research

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Adolescent Assent and Reconsent for Biobanking: Recent Developments and Emerging Ethical Issues

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ChatGPT is a promising tool to increase readability of orthopedic research consents

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The ethical aspects of human organ-on-chip models: A mapping review

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The Genetic Data Market: Institutional Governance of Academic/Industry Research Partnerships for the Public Good

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Impact of structural racism on inclusion and diversity in precision oncology: A scoping and critical review of the literature

Geneviève, L. D., Elger, B. S., & Wangmo, T. (2022) · Cambridge Prisms Precision Medicine · doi:10.1017/pcm.2022.4 · Cited by 13

«If you give them your little finger, they’ll tear off your entire arm»: losing trust in biobank research

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“Let’s Just Wait Until She’s Born”: Temporal Factors That Shape Decision-Making for Prenatal Genomic Sequencing Amongst Families Underrepresented in Genomic Research

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Advocacy and actions to address disparities in access to genomic health care: A report on a National Academies workshop

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Community Perspectives on Communicating About Precision Medicine in an Alaska Native Tribal Health Care System

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Nursing strategies to address health disparities in genomics-informed care: a scoping review

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Lessons Learned in Clinical Research Recruitment of Midlife Latinas During COVID-19

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Patient priorities for fulfilling the principle of respect in research: findings from a modified Delphi study

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Ethical Challenges in COVID-19 Biospecimen Research

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Return of genomic results does not motivate intent to participate in research for all: Perspectives across 22 countries

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Genetic Data Aren't So Special: Causes and Implications of Reidentification

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Understanding synthetic data: artificial datasets for real-world evidence

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The ethics and economics of organoid commercialization: potential donors’ perspectives

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The difficulties of broad data sharing in genomic medicine: Empirical evidence from diverse participants in prenatal and pediatric clinical genomics research

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Religious Perspectives on Precision Medicine in Singapore

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Ready, Set, Sort! A User-Guide to Card Sorts for Community-Engaged Empirical Bioethics

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Ethical Issues in Research and Development of Epigenome-wide Technologies

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The Public’s Ethical Issues with Brain Organoid Research and Application

Evans, J. H. (2022) · AJOB Neuroscience · doi:10.1080/21507740.2022.2048727 · Cited by 8

Methodological opportunities in genomic data analysis to advance health equity

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Biobanking: How Oncology Nurses Can Contribute to Its Use

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Wrestling with Public Input on an Ethical Analysis of Scientific Research

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Enabling Health Data Sharing with Fine-Grained Privacy

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Are Public Repository Requirements Exacerbating Lack of Diversity?

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Electronic informed consent information for residual newborn specimen research: findings from focus groups with diverse populations

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Palliative Care as a Necropolitical Technology

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Parent attitudes towards data sharing in developmental science

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Community Stakeholders’ Perspectives on Introducing Human Papillomavirus Vaccination and Biobanking Evidence-Based Programs Within Medically Underserved Communities: A Community-Engaged Approach

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N = many me’s: self-surveillance for Precision Public Health

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Artificial Intelligence in Otolaryngology

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Post-identifiability in changing sociotechnological genomic data environments

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Privacy, Policy, and Profits: Survey of Patient Preferences for Research on De-Identified Biosamples

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Ethical Considerations in Geriatric Dentistry

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Trust in prenatal exome sequencing for expectant families facing unexplained fetal anomalies

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Imbalanced media portrayal: a content analysis of precision medicine in US news of 2015–2021

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Tailored community engagement to address the genetics diversity gap

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Religious factors predict support for genomic medicine more strongly than politics, education, or trust: A survey of 4,939 adults in the United States

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Voluntary Assisted Dying: Law? Health? Justice?

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Co-creation and engagement in a DNA integrity cohort study

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Biobanks—Organization, operations, and role in genomics research

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Use of a Qualitative Story Deck to Create Scenarios and Uncover Factors Associated with African American Participation in Genomics Research

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Promoting Public Good and Wellness from the Perspective of a Midwestern Regional Baptist Church Community-led Research Engagement Partnership

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What Brain Organoid Research Can Gain From Engaging Biospecimen Donors

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Pediatric biorepository participation during the COVID-19 pandemic: predictors of enrollment and biospecimen donation

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Precision medicine and the ethics of electronic health records and genomics

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Relational Help-Seeking Among Newlywed African American Couples

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Ethnoracialized group differences in attitudes and knowledge about schizophrenia and willingness to engage in biomarker research: The UBIGR Study

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Spotlighting Structural Constraints on Decisions About Participation in Genomic and Precision Medicine

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Cultural Competency and Genetic Counseling

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Is Consent Required for Genetic Research in a Death Investigation System in Canada?

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Decision: Artificial intelligence for early detection of renal cancer in computed tomography: A review — R0/PR5

Geneviève, L. D., Elger, B. S., & Wangmo, T. (2022) · Cambridge Prisms Precision Medicine · doi:10.1017/pcm.2022.9.pr5

Review: Artificial intelligence for early detection of renal cancer in computed tomography: A review — R0/PR3

Geneviève, L. D., Elger, B. S., & Wangmo, T. (2022) · Cambridge Prisms Precision Medicine · doi:10.1017/pcm.2022.9.pr3

Review: Artificial intelligence for early detection of renal cancer in computed tomography: A review — R0/PR2

Geneviève, L. D., Elger, B. S., & Wangmo, T. (2022) · Cambridge Prisms Precision Medicine · doi:10.1017/pcm.2022.9.pr2

Author comment: Artificial intelligence for early detection of renal cancer in computed tomography: A review — R0/PR1

Smith, T. F. (2022) · Cambridge Prisms Precision Medicine · doi:10.1017/pcm.2022.9.pr1

Recommendation: Artificial intelligence for early detection of renal cancer in computed tomography: A review — R0/PR4

Geneviève, L. D., Elger, B. S., & Wangmo, T. (2022) · Cambridge Prisms Precision Medicine · doi:10.1017/pcm.2022.9.pr4

Understanding men’s beliefs and concerns about linking health data in the context of precision medicine

Allen, C. G., Jefferson, M. S., Magwood, G., Melvin, C. L., Babatunde, O. A., & Halbert, C. H. (2023) · Journal of Clinical and Translational Science · doi:10.1017/cts.2023.573

Review: The ethical challenges of diversifying genomic data: A qualitative evidence synthesis — R0/PR3

Hardcastle, F., Lyle, K., Horton, R., et al. (2023) · Cambridge Prisms Precision Medicine · doi:10.1017/pcm.2023.20.pr3

Recommendation: The ethical challenges of diversifying genomic data: A qualitative evidence synthesis — R0/PR4

Hardcastle, F., Lyle, K., Horton, R., et al. (2023) · Cambridge Prisms Precision Medicine · doi:10.1017/pcm.2023.20.pr4

Author comment: The ethical challenges of diversifying genomic data: A qualitative evidence synthesis — R1/PR6

Hardcastle, F. (2023) · Cambridge Prisms Precision Medicine · doi:10.1017/pcm.2023.20.pr6

Decision: The ethical challenges of diversifying genomic data: A qualitative evidence synthesis — R1/PR10

Hardcastle, F., Lyle, K., Horton, R., et al. (2023) · Cambridge Prisms Precision Medicine · doi:10.1017/pcm.2023.20.pr10

Review: The ethical challenges of diversifying genomic data: A qualitative evidence synthesis — R1/PR7

Hardcastle, F., Lyle, K., Horton, R., et al. (2023) · Cambridge Prisms Precision Medicine · doi:10.1017/pcm.2023.20.pr7

Review: The ethical challenges of diversifying genomic data: A qualitative evidence synthesis — R1/PR8

Hardcastle, F., Lyle, K., Horton, R., et al. (2023) · Cambridge Prisms Precision Medicine · doi:10.1017/pcm.2023.20.pr8

Author comment: The ethical challenges of diversifying genomic data: A qualitative evidence synthesis — R0/PR1

Hardcastle, F. (2023) · Cambridge Prisms Precision Medicine · doi:10.1017/pcm.2023.20.pr1

Recommendation: The ethical challenges of diversifying genomic data: A qualitative evidence synthesis — R1/PR9

Hardcastle, F., Lyle, K., Horton, R., et al. (2023) · Cambridge Prisms Precision Medicine · doi:10.1017/pcm.2023.20.pr9

Review: The ethical challenges of diversifying genomic data: A qualitative evidence synthesis — R0/PR2

Hardcastle, F., Lyle, K., Horton, R., et al. (2023) · Cambridge Prisms Precision Medicine · doi:10.1017/pcm.2023.20.pr2

Decision: The ethical challenges of diversifying genomic data: A qualitative evidence synthesis — R0/PR5

Hardcastle, F., Lyle, K., Horton, R., et al. (2023) · Cambridge Prisms Precision Medicine · doi:10.1017/pcm.2023.20.pr5

Notes

Evans, J. H. (2024) · doi:10.1093/oso/9780197750704.002.0006

Contrasting the Ethical Perspectives of Biospecimen Research Among Individuals with Familial Risk for Hereditary Cancer and Biomedical Researchers: Implications for Researcher Training

Quinn, G. P., Koskan, A. M., Sehovic, I., Pal, T., Meade, C. D., & Gwede, C. K. (2014) · Genetic Testing and Molecular Biomarkers · doi:10.1089/gtmb.2013.0461 · Cited by 7

Public attitudes regarding the use of electronic health information and residual clinical tissues for research

Botkin, J. R., Rothwell, E., Anderson, R., Stark, L. A., & Mitchell, J. A. (2013) · Journal of Community Genetics · doi:10.1007/s12687-013-0175-8 · Cited by 36

Additional file 1: of A survey of patient perspectives on the research use of health information and biospecimens

Page, S. A., Manhas, K. P., & Muruve, D. A. (2016) · Figshare · doi:10.6084/m9.figshare.4396643

A survey of patient perspectives on the research use of health information and biospecimens

Page, S. A., Manhas, K. P., & Muruve, D. A. (2016) · BMC Medical Ethics · doi:10.1186/s12910-016-0130-4 · Cited by 37

Abstract PD8-06: Attitudes towards use of archived biospecimens among patients with cancer

Peppercorn, J. M., Campbell, E. G., Rabin, J. T., Quain, K. M., Hlubocky, F. J., Colyar, D., Sequist, L. V. D., Bardia, A., Horick, N., Isakoff, S. J., et al. (2018) · Cancer Research · doi:10.1158/1538-7445.sabcs17-pd8-06