Donors, authors, and owners: how is genomic citizen science addressing interests in research outputs? - PubMed - NCBI

Donors, authors, and owners: how is genomic citizen science addressing interests in research outputs? - PubMed - NCBI

BMC Med Ethics. 2019 Nov 21;20(1):84. doi: 10.1186/s12910-019-0419-1.

Donors, authors, and owners: how is genomic citizen science addressing interests in research outputs?

Guerrini CJ1, Lewellyn M2, Majumder MA2, Trejo M2, Canfield I2, McGuire AL2.

Author information

1

Baylor College of Medicine, Center for Medical Ethics and Health Policy, 1 Baylor Plaza, Houston, TX, 77030, USA. guerrini@bcm.edu.

2

Baylor College of Medicine, Center for Medical Ethics and Health Policy, 1 Baylor Plaza, Houston, TX, 77030, USA.

Abstract

BACKGROUND:

Citizen science is increasingly prevalent in the biomedical sciences, including the field of human genomics. Genomic citizen science initiatives present new opportunities to engage individuals in scientific discovery, but they also are provoking new questions regarding who owns the outputs of the research, including intangible ideas and discoveries and tangible writings, tools, technologies, and products. The legal and ethical claims of participants to research outputs become stronger-and also more likely to conflict with those of institution-based researchers and other stakeholders-as participants become more involved, quantitatively and qualitatively, in the research process. It is not yet known, however, how genomic citizen science initiatives are managing the interests of their participants in accessing and controlling research outputs in practice. To help fill this gap, we conducted an in-depth review of relevant policies and practices of U.S.-based genomic citizen science initiatives.

METHODS:

We queried the peer-reviewed literature and grey literature to identify 22 genomic citizen science initiatives that satisfied six inclusion criteria. A data collection form was used to capture initiative features, policies, and practices relevant to participants' access to and control over research outputs.

RESULTS:

This analysis revealed that the genomic citizen science landscape is diverse and includes many initiatives that do not have institutional affiliations. Two trends that are in apparent tension were identified: commercialization and operationalization of a philosophy of openness. While most initiatives supported participants' access to research outputs, including datasets and published findings, none supported participants' control over results via intellectual property, licensing, or commercialization rights. However, several initiatives disclaimed their own rights to profit from outputs.

CONCLUSIONS:

There are opportunities for citizen science initiatives to incorporate more features that support participants' access to and control over research outputs, consistent with their specific objectives, operations, and technical capabilities.

KEYWORDS:

Citizen science; Direct-to-consumer genetic testing; Intellectual property; Research ethics; Return of results

PMID:

 

31752834

 

DOI:

 

10.1186/s12910-019-0419-1

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