Ethics in Clinical Research

'Somebody to find an answer, so I can sleep at night': Diverse Perspectives on Genomic Research for Rare Disease

This study explores equitable strategies for participant engagement in rare disease genomic research through interviews with underrepresented individuals and clinicians.

Perspectives in conducting task-based research in pediatric surgical epilepsy patients

The paper examines factors influencing task-based research participation in pediatric epilepsy patients undergoing sEEG, finding that comorbidities do not typically prevent participation.

Participant engagement and feedback in microbiome projects: a case of AWI-Gen 2

This paper describes a study on participant engagement and feedback in microbiome projects in Africa, finding that culturally appropriate and timely feedback can improve trust and motivate health behaviors.

Scanning for Representation: A Scoping Review of Racial and Ethnic Diversity in MRI Studies of the Maternal Brain

This paper reviews MRI studies of the maternal brain to assess racial and ethnic diversity, finding underreporting, overrepresentation of white participants, and geographic bias.

More Than Results: A Qualitative Study on the Role of Person-Centered Genetic Counseling in Parkinson Disease Research

This study explores how Parkinson's disease research participants experience genetic result disclosure and post-test counseling through qualitative interviews.

Community member, community liaison and researcher perspectives on the creation of HapMap and 1000 Genomes Project iPSCs

The paper surveys community and researcher perspectives on creating iPSCs from HapMap and 1000 Genomes Project biospecimens, finding broad support but also concerns.

Development and validation of a stakeholder-driven, self-contained electronic informed consent platform for trio-based genomic research studies

The paper develops and validates an electronic informed consent platform for trio-based genomic research, showing high participant comprehension and satisfaction.

Global Perspectives on Returning Genetic Research Results in Parkinson's Disease

This paper surveys global perspectives on returning genetic research results in Parkinson's disease, finding disparities in access, training, and policy practices across countries.

Diverse Participant Recruitment for Infant Sequencing in the BabySeq Project

The paper explores parental perspectives on genomic sequencing research participation among under-represented racial and ethnic groups, finding high interest but identifying barriers to enrollment.

From Biobanking to Personalized Medicine: the journey of the Estonian Biobank

The paper reviews the Estonian Biobank's role in advancing genomics research and personalized medicine through its comprehensive data and translational focus.

Researcher Views on Multi-omics Return of Results to Research Participants: Insights from the Molecular Transducers of Physical Activity Consortium (MoTrPAC) Study

The paper explores researchers' perspectives on returning multi-omics results to participants in the MoTrPAC study, highlighting both support and concerns about ethical, logistical, and communication challenges.

Building a Vertically-Integrated Genomic Learning Health System: The Colorado Center for Personalized Medicine Biobank

The paper describes the CCPM Biobank, a dual-purpose genomic resource linking health records and genomic data to support research and clinical applications.

Recruitment, Consent and DNA Sample Acquisition in a U.S. Precision Health Cohort During the COVID-19 Pandemic

The paper describes how the Yale Generations Project adapted its recruitment, consent, and DNA sample acquisition processes to remote methods during the COVID-19 pandemic, resulting in continued enrollment and sample collection.

Influences of race and clinical variables on psychiatric genetic research participation: Results from a schizophrenia sample

This study examines factors influencing genetic study participation in a schizophrenia sample, finding race and clinical variables significantly affect participation rates.

Development and Implementation of Novel Chatbot-based Genomic Research Consent

This paper compares traditional and chatbot-based consent processes for genomics research, finding shorter consent times and positive participant feedback with the chatbot.

Predictors for participation in DNA self-sampling of childhood cancer survivors in Switzerland

The paper identifies factors influencing DNA self-sampling participation among childhood cancer survivors in Switzerland, finding that foreign nationality, age 30-39, and cancer predisposition syndromes are associated with lower participation.

Phenotypic and genetic factors associated with differential consent to record linkage for prescription history in the Australian Genetics of Depression Study

The paper examines factors influencing consent to prescription record linkage in a depression genetics study, finding phenotypic and genetic associations with participation rates.

Factors Influencing Precision Medicine Knowledge and Attitudes

The paper examines factors influencing precision medicine knowledge and trust in biomedical research using survey data from a diverse sample.

Return of Results in a Global Sample of Psychiatric Genetics Researchers: Practices, Attitudes, and Knowledge

The paper surveys psychiatric genetics researchers on their return of results practices, finding support for returning medically relevant findings but lacking adequate guidelines and knowledge.

Return of Results in Psychiatric Genetics Research: Perceptions of Best Practices in a Global Sample of Psychiatric Genetics Researchers

This study surveys global psychiatric genetics researchers on best practices for returning genetic results related to psychiatric disorders, identifying challenges and preferred disclosure methods.

Open Humans: A platform for participant-centered research and personal data exploration

Open Humans is a platform that aggregates personal data from various sources, enabling participant-centered research and data exploration while balancing privacy and autonomy.

PGP-UK: a research and citizen science hybrid project in support of personalized medicine

PGP-UK explores citizen science in genomics by recruiting participants, sharing data, and developing tools to advance personalized medicine.

The ethics conundrum in Recall by Genotype (RbG) research: Perspectives from birth cohort participants

This study examines ethical challenges in Recall by Genotype (RbG) research through interviews with ALSPAC participants, highlighting the importance of trust and transparency in long-term cohort studies.

Balancing the Local and the Universal in Maintaining Ethical Access to a Genomics Biobank

The paper examines the balance between open data access and ethical governance in the Generation Scotland biobank, highlighting the importance of local decision-making in biobank management.