[HTML][HTML] Should police have access to genetic genealogy databases? Capturing the Golden State Killer and other criminals using a controversial new forensic …

CJ Guerrini, JO Robinson, D Petersen… - PLoS biology, 2018 - journals.plos.org
On April 24, 2018, a suspect in California's notorious Golden State Killer cases was arrested
after decades of eluding the police. Using a novel forensic approach, investigators identified …

[HTML][HTML] Who's on third? Regulation of third-party genetic interpretation services

CJ Guerrini, JK Wagner, SC Nelson, GH Javitt… - Genetics in …, 2020 - Elsevier
In recent years, third-party genetic interpretation services have emerged to help individuals
understand their raw genetic data obtained from researchers, clinicians, and direct-to …

Research data management in health and biomedical citizen science: practices and prospects

A Borda, K Gray, Y Fu - JAMIA open, 2020 - academic.oup.com
Background Public engagement in health and biomedical research is being influenced by
the paradigm of citizen science. However, conventional health and biomedical research …

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

A Fiske, B Prainsack, A Buyx - Journal of medical ethics, 2019 - jme.bmj.com
In its expansion to genomic, epidemiological and biomedical research, citizen science has
been promoted as contributing to the democratisation of medical research and healthcare …

Approaches to governance of participant-led research: a qualitative case study

AD Grant, GI Wolf, C Nebeker - BMJ open, 2019 - bmjopen.bmj.com
Objectives Participant-led research (PLR) is a rapidly develo** form of citizen science in
which individuals can create personal and generalisable knowledge. Although PLR lacks a …

[HTML][HTML] Third-party genetic interpretation tools: a mixed-methods study of consumer motivation and behavior

SC Nelson, DJ Bowen, SM Fullerton - The American Journal of Human …, 2019 - cell.com
In an effort to meet ethical obligations and/or participant expectations, researchers may
consider offering" raw" or uninterpreted genetic data for result return. It is therefore important …

Genomics: data sharing needs an international code of conduct

M Phillips, F Molnár-Gábor, JO Korbel, A Thorogood… - Nature, 2020 - nature.com
Genomics: data sharing needs an international code of conduct Skip to main content Thank you
for visiting nature.com. You are using a browser version with limited support for CSS. To obtain …

Exploring the challenges of and solutions to sharing personal genomic data for use in healthcare

L Parvinen, A Alamäki, H Hallikainen… - Health Informatics …, 2023 - journals.sagepub.com
Boosted by the COVID-19 pandemic, as well as the tightened General Data Protection
Regulation (GDPR) legislation within the European Union (EU), individuals have become …

Tensions in ethics and policy created by National Precision Medicine Programs

J Minari, KB Brothers, M Morrison - Human genomics, 2018 - Springer
Precision medicine promises to use genomics and other data-intensive approaches to
improve diagnosis and develop new treatments for major diseases, but also raises a range …

Return of results and data to study participants

SM Wolf, BJ Evans - Science, 2018 - science.org
Researchers conducting imaging, environmental health, and genetics studies have offered
participants their research findings for years, publishing data on this experience and …