14 Notably, ‘consent for contact’ processes are being put

14 Notably, ‘consent for contact’ processes are being put

in place Sorafenib Tosylate IC50 in a range of health research facilities. A project in British Columbia, Canada has, since 2007, set up ‘Permission to Contact’ platforms in different outpatient health clinics (cancer, cardiac and maternal health), which have proved effective in enhancing enrolment into translational research projects.15 16 In the UK, the UK Biobank project requires explicit consent in order both to access the medical records of those joining the project, as well as potentially to recontact these participants in the future.17 While such generic consent is appealing for researchers, its operationalisation poses a number of ethical,

sociological, governance-related and technical questions (box 1). There is growing interest in how EHRs might be used in this regard. To date, the use of EHRs for recruitment has relied on mechanisms through which a member of the clinical team of the patient identified—via pseudonymised searching—as potentially eligible for the study is alerted and invited to contact that patient. Such use therefore currently maintains the distinction between those designing the studies and those recruiting into the studies.18–22 Box 1 ‘Consent for contact’: sociological, ethical and technical issues How does ‘consent for contact’ reshape relationships between treating clinicians, patients and researchers—in that the traditional role of clinician (as patient advocate and/or paternalistic patient

protector) in relation to the researcher is downgraded in the emergence of a new kind of compact between patient and researcher? How does patients’ giving of generic consent to be contacted affect how they subsequently respond to invitations to participate in specific research projects (ie, do they feel more of an onus to give consent here, too, having given consent Carfilzomib once already)? Does ‘consent for contact’ encourage an assumption that willingness to participate in health research is a moral obligation—and if so, what are the ethical, clinical and sociological implications? How can Electronic Health Records be best used in developing consent for contact procedures? How should their use navigate complex questions regarding control, ownership and use of such data in relation to consent, authorisation and safe-keeping? That many of the questions surrounding the use of EHRs for research remain unresolved, at a conceptual and an empirical level, is demonstrated by the number of medical, bioethical and governance-oriented bodies currently reflecting on them.

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