Database shares that transform research subjects into partners

Kain, Renate; Kahn, S. D.; Thompson, D. H.; Lewis, David; Barker, D W; Bustamante, Carlos; Cabou, Christian; Casdin, Alexander; García, Francisco; Paragas, Jason; Rajagopal, Aditya; Terry, Sharon F.; Zeeland, Ashley Van; Yu, Ed; Erlich, Yaniv; Barry, D. B.

doi:10.1038/s41587-019-0278-9

Cited by 13 publications

(9 citation statements)

References 11 publications

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“…https://www.lunadna.com. GCSIS Working Group elected to trial the LunaDNA platform to host the GCSIS because it is a secure data collection and analysis platform (Kain et al., 2019). The LunaDNA platform is also described at http://www.lunadna.com and is approved by the Genetic Alliance IRB—Protocols #LUNA001 and #LP001.…”

Section: Methodsmentioning

confidence: 99%

Results of the Genetic Counselor SARS‐CoV‐2 Impact Survey from the National Society of Genetic Counselors: Progress and penalty during the COVID‐19 pandemic

Pan

Doerr

Hoell

et al. 2021

Journal of Genetic Counseling

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The Genetic Counselor SARS‐CoV‐2 Impact Survey (GCSIS) describes the impact of the pandemic on genetic counselors and genetic counseling services. With this information, the National Society of Genetic Counselors (NSGC) can better: (1) support advocacy and access efforts for genetic counseling services at both federal‐ and state‐level; (2) promote effective billing and reimbursement for genetic counseling services provided via telemedicine; and (3) make decisions about how to best support genetic counselors. The survey was hosted on a novel data collection and analysis platform from LunaDNA and was open to all genetic counselors (n = 5,531 based on professional society membership). Survey response rate was approximately 3.8% (n = 212/5,531), with a demographic distribution broadly representative of the North American genetic counseling field. Genetic counselors remained largely employed, providing genetic counseling services throughout the pandemic, although almost one in five respondents (17%, n = 35/211) reported experiencing some degree of pandemic‐related financial hardship. Nearly all respondents (90%, n = 104/115) transitioned, at least in part, to remote work settings, with about half (47%. n = 88/189) reporting restrictions in the care they were able to provide. These shifts came at a cost: existing gaps in Medicare status for genetic counselors and attendant reimbursement concerns led to uncertainty about whether genetic counselors' work will be reimbursed. Outside of work, caregiving responsibilities increased for 34% (n = 74/212) of respondents. The results of the GCSIS amplify the importance of federal‐ and state‐level advocacy efforts for genetic counselors and their employers. They also highlight the impact of broader cultural intransigence on our majority‐female profession. During the pandemic, genetic counselors continued to provide care, but without consistent financial support or expectation of reimbursement. The ability to attract and retain talented professionals to the genetic counseling field will hinge on the success of continued advocacy efforts.

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Section: Methodsmentioning

confidence: 99%

Results of the Genetic Counselor SARS‐CoV‐2 Impact Survey from the National Society of Genetic Counselors: Progress and penalty during the COVID‐19 pandemic

Pan

Doerr

Hoell

et al. 2021

Journal of Genetic Counseling

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“…PanCAN chose to utilize the PEER (Platform for Engaging Everyone Responsibly) platform maintained by Genetic Alliance to host the Registry. 14 , 15 PanCAN staff, working with pancreatic cancer disease experts serving as consultants, developed the Registry questionnaires with input and review by members of the PanCAN Scientific and Medical Advisory Board. The Patient Services team also provided feedback and reviewed the surveys based on experiences with patients who contacted the PanCAN call center.…”

Section: Resultsmentioning

confidence: 99%

Leveraging patient‐reported outcomes (PROs) in patients with pancreatic cancer: The Pancreatic Cancer Action Network (PanCAN) online patient registry experience

et al. 2021

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Background: The Pancreatic Cancer Action Network (PanCAN) Patient Registry is an online, pancreatic cancer-specific, global registry enabling patients to selfreport sociodemographics, disease/management characteristics, and patientreported outcomes (PROs). We sought to describe the creation, user experience, and research potential of the PanCAN Registry. Methods: We obtained data to describe (1) the creation of the Registry (questionnaire development, marketing efforts, and regulatory considerations); (2) the user experience (user characteristics and interactions with the registry following inception); and (3) the research potential of the registry (comparing PROs and treatment patterns by age [±65 years] and treatment site [community or academic] for users with de novo metastatic disease). Results:The Registry was conceived as part of PanCAN's strategic plan for a personalized therapy initiative. PanCAN staff and disease expert consultants developed questionnaires hosted on an electronic PRO platform. Users had the option to include their data in research efforts, and the Registry platform received institutional review board approval. From 7/2015 to 12/2020, 2187 patients visited the registry and 1697 (77.6%) completed at least one survey (median age = 64 years [range: 24-90], 47.9% women, 88.7% White, 34.0% metastatic disease). Among patients with metastatic disease (N = 567), 46.0% were ≥65 years old and 67.5% received treatment at community sites. Patients ≥65 years reported feeling less hopeful about the treatment plan (12.4% vs. 24.3%, p = 0.003), and patients treated at community sites reported more frequent treatment breaks of >2 weeks (58.2% vs. 28.1%, p < 0.001).

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“…With respect to benefits sharing, new business models are emerging that financially reward participants who share their personal health data with researchers, including by offering equity in cooperatives that monetize the data (Ahmed and Shabani 2019 ; Kain et al . 2019 ). Although framing such data as property exclusively “owned” by contributors is problematic from a legal perspective (Evans 2016 ; Contreras 2019 ) and introduces ethical concerns associated with commodification (McGuire et al .…”

Section: Discussionmentioning

confidence: 99%

“Idealists and capitalists”: ownership attitudes and preferences in genomic citizen science

Guerrini

Contreras

Brooks

et al. 2022

New Genetics and Society

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The perspectives of genomic citizen scientists on ownership of research outputs are not well understood, yet they are useful for identifying alignment of participant expectations and project practices and can help guide efforts to develop innovative tools and strategies for managing ownership claims. Here, we report findings from 52 interviews conducted in 2018 and 2019 to understand genomic citizen science stakeholders’ conceptualizations of, experiences with, and preferences for ownership of research outputs. Interviewees identified four approaches for recognizing genomic citizen scientists’ ownership and related credit interests in research outputs: shared governance via commons models; fractional ownership of benefits; full and creative attribution; and offensive and defensive patenting. Interviewees also agreed that the model selected by any project should at least maximize access to research outputs and, as appropriate and to the extent possible, broadly distribute rights of control and entitlements to research benefits.

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Database shares that transform research subjects into partners

Cited by 13 publications

References 11 publications

Results of the Genetic Counselor SARS‐CoV‐2 Impact Survey from the National Society of Genetic Counselors: Progress and penalty during the COVID‐19 pandemic

Results of the Genetic Counselor SARS‐CoV‐2 Impact Survey from the National Society of Genetic Counselors: Progress and penalty during the COVID‐19 pandemic

Leveraging patient‐reported outcomes (PROs) in patients with pancreatic cancer: The Pancreatic Cancer Action Network (PanCAN) online patient registry experience

“Idealists and capitalists”: ownership attitudes and preferences in genomic citizen science

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