From patients to partners: participant-centric initiatives in biomedical research

The Value Of Health Care Information Exchange And Interoperability: There is a business case to be made for spending money on a fully standardized nationwide system.

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Web-based genome-wide association study identifies two novel loci and a substantial genetic component for Parkinson’s disease

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Web-Based, Participant-Driven Studies Yield Novel Genetic Associations for Common Traits

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Accelerated clinical discovery using self-reported patient data collected online and a patient-matching algorithm

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Research ethics and the challenge of whole-genome sequencing

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The tension between data sharing and the protection of privacy in genomics research

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Genomic research and wide data sharing: Views of prospective participants

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From the Editor

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Assessing the Privacy Risks of Data Sharing in Genomics

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Effects of an integrated clinical information system on medication safety in a multi-hospital setting

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From single biobanks to international networks: developing e-governance

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Whose Personal Control? Creating Private, Personally Controlled Health Records for Pediatric and Adolescent Patients

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Power to the People : Participant Ownership of Clinical Trial Data

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Clinical Information Systems: Instant Ubiquitous Clinical Data for Error Reduction and Improved Clinical Outcomes

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Using NHS Patient Data for Research Without Consent

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Patients providing the answers: narrowing the gap in data quality for emergency care

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Electronic Consent Channels: Preserving Patient Privacy Without Handcuffing Researchers

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Consenting in Population Genomics as an Open Communication Process

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Data Protection and Sample Management in Biobanking - A legal dichotomy

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Benefits Of Interoperability: A Closer Look At The Estimates

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WHO lists "best buys" for cutting deaths from non-communicable disease

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The Benefits of Sharing Clinical Information

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The value of healthcare information exchange and interoperability in New York state.

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BMA warns against letting patients have access to their electronic records

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NHS Connecting for Health and the National Programme for Information Technology

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The NIMH Research Domain Criteria (RDoC) Project: Precision Medicine for Psychiatry

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Dynamic consent: a patient interface for twenty-first century research networks

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The ethics of big data: current and foreseeable issues in biomedical contexts

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Using electronic health records for population health research: a review of methods and applications

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Routes for breaching and protecting genetic privacy

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Health 2050: The Realization of Personalized Medicine through Crowdsourcing, the Quantified Self, and the Participatory Biocitizen

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Dynamic Consent: a potential solution to some of the challenges of modern biomedical research

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Challenges and opportunities of drug repositioning

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Patient involvement in clinical research: why, when, and how

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Broad Consent for Research With Biological Samples: Workshop Conclusions

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Broad consent versus dynamic consent in biobank research: Is passive participation an ethical problem?

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Forgetting personal data and revoking consent under the GDPR: Challenges and proposed solutions

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Personalized Telehealth in the Future: A Global Research Agenda

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The tension between data sharing and the protection of privacy in genomics research

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Sharing Clinical Trial Data

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Citizen science or scientific citizenship? Disentangling the uses of public engagement rhetoric in national research initiatives

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Prioritizing targets for precision cancer medicine

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The Ethics of Big Data: Current and Foreseeable Issues in Biomedical Contexts

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International Charter of principles for sharing bio-specimens and data

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Big Data in medical research and EU data protection law: challenges to the consent or anonymise approach

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A human rights approach to an international code of conduct for genomic and clinical data sharing

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A Consent Model for Blockchain-Based Health Data Sharing Platforms

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Indigenous body parts, mutating temporalities, and the half-lives of postcolonial technoscience

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Locating ethics in data science: responsibility and accountability in global and distributed knowledge production systems

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’Personalized Medicine’: What’S in a Name?

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An ensemble heterogeneous classification methodology for discovering health-related knowledge in social media messages

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Meta Consent – A Flexible Solution to the Problem of Secondary Use of Health Data

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Reflections on dynamic consent in biomedical research: the story so far

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The Cooperative Health Research in South Tyrol (CHRIS) study: rationale, objectives, and preliminary results

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The Complexities of Genomic Identifiability

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Adapting Standards: Ethical Oversight of Participant-Led Health Research

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Rare genetic diseases: update on diagnosis, treatment and online resources

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If you build it, they will come: unintended future uses of organised health data collections

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Dwarna: a blockchain solution for dynamic consent in biobanking

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Ethical Legal and Social Issues of Biobanking: Past, Present, and Future

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Becoming partners, retaining autonomy: ethical considerations on the development of precision medicine

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Meta consent: a flexible and autonomous way of obtaining informed consent for secondary research

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Patient and public involvement to build trust in artificial intelligence: A framework, tools, and case studies

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Ethical dilemmas posed by mobile health and machine learning in psychiatry research

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Identifying disease mutations in genomic medicine settings: current challenges and how to accelerate progress

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Patient-Powered Research Networks Aim To Improve Patient Care And Health Research

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Self-guided management of exome and whole-genome sequencing results: changing the results return model

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Patients as Research Partners; How to Value their Perceptions, Contribution and Labor?

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The General Data Protection Regulation

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From Diabetes Care to Diabetes Cure—The Integration of Systems Biology, eHealth, and Behavioral Change

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Person-oriented research ethics: integrating relational and everyday ethics in research

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Research Conducted Using Data Obtained through Online Communities: Ethical Implications of Methodological Limitations

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Involvement of Patient Organisations in Research and Development of Orphan Drugs for Rare Diseases in Europe

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Meeting the needs of underserved populations: setting the agenda for more inclusive citizen science of medicine

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“Trust is not something you can reclaim easily”: patenting in the field of direct-to-consumer genetic testing

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Ten years of dynamic consent in the CHRIS study: informed consent as a dynamic process

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Ethical issues in the export, storage and reuse of human biological samples in biomedical research: perspectives of key stakeholders in Ghana and Kenya

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Improving the informed consent process in international collaborative rare disease research: effective consent for effective research

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Implementing risk-stratified screening for common cancers: a review of potential ethical, legal and social issues

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Towards ‘Engagement 2.0’: Insights from a study of dynamic consent with biobank participants

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The evolution of withdrawal: negotiating research relationships in biobanking

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Long-term participant retention and engagement patterns in an app and wearable-based multinational remote digital depression study

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The challenges of longitudinal surveys in the flood risk domain

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Reforming Biobank Consent Policy: A Necessary Move Away from Broad Consent Toward Dynamic Consent

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The ethics of participant-led biomedical research

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Testing an Online, Dynamic Consent Portal for Large Population Biobank Research

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Data sharing policy design for consortia: challenges for sustainability

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Taking patient involvement seriously: a critical ethical analysis of participatory approaches in data-intensive medical research

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Balancing Between Privacy and Patient Needs for Health Information in the Age of Participatory Health and Social Media: A Scoping Review

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The Patient Reported Outcomes, Burdens and Experiences (PROBE) Project: development and evaluation of a questionnaire assessing patient reported outcomes in people with haemophilia

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Evolving approaches to the ethical management of genomic data

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Connected Health User Willingness to Share Personal Health Data: Questionnaire Study

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COllaborative open platform E-cohorts for research acceleration in trials and epidemiology

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Sharing my health data: a survey of data sharing preferences of healthy individuals.

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Data Work: Meaning-Making in the Era of Data-Rich Medicine

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Every participant is a PI. Citizen science and participatory governance in population studies

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Pediatric Data Sharing in Genomic Research: Attitudes and Preferences of Parents

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Power to the people: a wiki-governance model for biobanks

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Informed consent for human genetic and genomic studies: a systematic review

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Perspectives on Human Microbiome Research Ethics

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Indigenous blood and ethical regimes in the United States and Australia since the 1960s

Radin, J., & Kowal, E. (2015) · American Ethnologist · doi:10.1111/amet.12168 · Cited by 45 · see citing works

Beneficiary contact and innovation: The relation between contact with patients and medical innovation under different institutional logics

Llopis, Ó., & D’Este, P. (2016) · Research Policy · doi:10.1016/j.respol.2016.03.004 · Cited by 46 · see citing works

Innovative Uses of Electronic Health Records and Social Media for Public Health Surveillance

Eggleston, E., & Weitzman, E. R. (2014) · Current Diabetes Reports · doi:10.1007/s11892-013-0468-7 · Cited by 43 · see citing works

Privacy and Progress in Whole Genome Sequencing

(2014) · Jahrbuch für Wissenschaft und Ethik · doi:10.1515/jwiet-2014-0119 · Cited by 43 · see citing works

Community perspectives on public health biobanking: an analysis of community meetings on the Michigan BioTrust for Health

Thiel, D. B., Platt, T., Platt, J. E., King, S. B., & Kardia, S. L. R. (2013) · Journal of Community Genetics · doi:10.1007/s12687-013-0162-0 · Cited by 42 · see citing works

Towards Principles–Based Approaches to Governance of Health–Related Research Using Personal Data

Laurie, G. T., & Sethi, N. (2013) · European Journal of Risk Regulation · doi:10.1017/s1867299x00002786 · Cited by 41 · see citing works

Revealing the results of whole-genome sequencing and whole-exome sequencing in research and clinical investigations: some ethical issues: Table 1

Hallowell, N., Hall, A., Alberg, C., & Zimmern, R. L. (2014) · Journal of Medical Ethics · doi:10.1136/medethics-2013-101996 · Cited by 41 · see citing works

Stewardship Practices of U.S. Biobanks

Henderson, G. E., Edwards, T., Cadigan, R. J., Davis, A. M., Zimmer, C., Conlon, I., & Weiner, B. J. (2013) · Science Translational Medicine · doi:10.1126/scitranslmed.3007362 · Cited by 41 · see citing works

Strategies to Uplift Novel Mendelian Gene Discovery for Improved Clinical Outcomes

Seaby, E. G., Rehm, H. L., & O’Donnell‐Luria, A. (2021) · Frontiers in Genetics · doi:10.3389/fgene.2021.674295 · Cited by 39 · see citing works

Informatics and clinical genome sequencing: opening the black box

Moorthie, S., Hall, A., & Wright, C. (2012) · Genetics in Medicine · doi:10.1038/gim.2012.116 · Cited by 36 · see citing works

Moving psychological assessment out of the controlled laboratory setting: Practical challenges.

Holmlund, T. B., Foltz, P. W., Cohen, A. S., Johansen, H. D., Sigurdsen, R., Fugelli, P., Bergsager, D., Cheng, J., Bernstein, J., Rosenfeld, E. P., et al. (2019) · Psychological Assessment · doi:10.1037/pas0000647 · Cited by 38 · see citing works

Rare disease research: Breaking the privacy barrier

Mascalzoni, D., Paradiso, A., & Hansson, M. (2014) · Applied & Translational Genomics · doi:10.1016/j.atg.2014.04.003 · Cited by 38 · see citing works

Collaboration to Understand Complex Diseases

Roberts, J. M., Mascalzoni, D., Ness, R. B., & Poston, L. (2016) · Hypertension · doi:10.1161/hypertensionaha.115.06133 · Cited by 38 · see citing works

“Let’s pull these technologies out of the ivory tower”: The politics, ethos, and ironies of participant-driven genomic research

McGowan, M. L., Choudhury, S., Juengst, E. T., Lambrix, M. A., Settersten, R. A., & Fishman, J. R. (2017) · BioSocieties · doi:10.1057/s41292-017-0043-6 · Cited by 38 · see citing works

The ECOUTER methodology for stakeholder engagement in translational research

Murtagh, M. J., Minion, J. T., Turner, A. J., Wilson, B., Blell, M. T., Ochieng, C., Murtagh, B., Roberts, S. J., Butters, O. W., & Burton, P. R. (2017) · BMC Medical Ethics · doi:10.1186/s12910-017-0167-z · Cited by 38 · see citing works

The Role of Participants in a Medical Information Commons

Majumder, M. A., Bollinger, J. M., Villanueva, A. G., Deverka, P. A., & Koenig, B. A. (2019) · The Journal of Law Medicine & Ethics · doi:10.1177/1073110519840484 · Cited by 38 · see citing works

Participant-centric initiatives: Tools to facilitate engagement in research

Anderson, N., Bragg, C., Hartzler, A. L., & Edwards, K. (2012) · Applied & Translational Genomics · doi:10.1016/j.atg.2012.07.001 · Cited by 37 · see citing works

Perspectives on Open Science and scientific data sharing:an interdisciplinary workshop.

Destro‐Bisol, G., Anagnostou, P., Capocasa, M., Bencivelli, S., Cerroni, A., Contreras, J. L., Enke, N., Fantini, B., Greco, P., Heeney, C., et al. (2014) · PubMed · doi:10.4436/jass.92006 · Cited by 43 · see citing works

ELSI practices in genomic research in East Asia: implications for research collaboration and public participation

Yoshizawa, G., Ho, C. W.-L., Zhu, W. P., Ching-Li, H., Syukriani, Y. F., Lee, I., Kim, H., Tsai, D. F. C., Minari, J., & Kato, K. (2014) · Genome Medicine · doi:10.1186/gm556 · Cited by 37 · see citing works

Data philanthropy and the design of the infraethics for information societies

Taddeo, M. (2016) · Philosophical Transactions of the Royal Society A: Mathematical, Physical and Engineering Sciences · doi:10.1098/rsta.2016.0113 · Cited by 35 · see citing works

Data protection legislation in Africa and pathways for enhancing compliance in big data health research

Munung, N. S., Staunton, C., Mazibuko, O., Wall, P. J., & Wonkam, A. (2024) · Health Research Policy and Systems · doi:10.1186/s12961-024-01230-7 · Cited by 43 · see citing works

Participatory Surveillance of Hypoglycemia and Harms in an Online Social Network

Weitzman, E. R., Kelemen, S., Quinn, M., Eggleston, E., & Mandl, K. D. (2013) · JAMA Internal Medicine · doi:10.1001/jamainternmed.2013.2512 · Cited by 35 · see citing works

“Tailored-to-You”: Public Engagement and the Political Legitimation of Precision Medicine

Blasimme, A., & Vayena, E. (2016) · Perspectives in biology and medicine · doi:10.1353/pbm.2017.0002 · Cited by 35 · see citing works

The RUDY study: using digital technologies to enable a research partnership

Teare, H., Hogg, J., Kaye, J. S., Luqmani, R. A., Rush, E. C., Turner, A., Watts, L. M., Williams, M., & Javaid, M. K. (2017) · European Journal of Human Genetics · doi:10.1038/ejhg.2017.57 · Cited by 34 · see citing works

Conceptual and Ethical Considerations for Citizen Science in Biomedicine

Fiske, A., Savio, L. D., Prainsack, B., & Buyx, A. (2018) · Öffentliche Wissenschaft und gesellschaftlicher Wandel · doi:10.1007/978-3-658-16428-7_10 · Cited by 33 · see citing works

Participant-centric initiatives: Tools to facilitate engagement in research

Anderson, N., Bragg, C., Hartzler, A. L., & Edwards, K. (2012) · Applied & Translational Genomics · doi:10.1016/j.atg.2012.07.001 · Cited by 37 · see citing works

Landscape of Participant-Centric Initiatives for Medical Research in the United States, the United Kingdom, and Japan: Scoping Review

Hamakawa, N., Nakano, R., Kogetsu, A., Coathup, V., Kaye, J. S., Yamamoto, B. A., & Kato, Y. (2020) · Journal of Medical Internet Research · doi:10.2196/16441 · Cited by 6 · see citing works

Dynamic consent: a patient interface for twenty-first century research networks

Kaye, J., Whitley, E. A., Lund, D., Morrison, M., Teare, H., & Melham, K. (2015) · European Journal of Human Genetics · doi:10.1038/ejhg.2014.71 · Cited by 780 · see citing works

Patient centric initiatives (PCIs) - a shift in the governance of science : Lessons from the biobanks world

Mascalzoni, D., Pramstaller, P. P., & Corradetti, C. (2014) · Research Ethics

Best Paper Selection

(2018) · Yearbook of Medical Informatics · doi:10.1055/s-0038-1667092