Ethical considerations for informed consent in infertility research: The use of electronic health records
نویسندگان
چکیده
The growing use of electronic health records (EHRs) in healthcare provides rich opportunities for biomedical research. Using EHRs, massive quantities of patient data can be extracted for research without the need to recruit patients, schedule study visits, or rely on self-reporting. However, this innovation poses significant concerns about patient privacy and confidentiality of data. Patients receiving infertility treatment may be particularly vulnerable to data breaches, as their EHRs often include sensitive health information about themselves, their partner, and their offspring. Helping patients with infertility to make informed decisions about sharing data is crucial, yet little is known about best practices for obtaining informed consent to use EHR data for research. This commentary reviews possible options for obtaining informed consent for EHR use among patients seeking fertility services. In addition, this commentary summarizes the limited research available on patient preferences for informed consent practices.
منابع مشابه
O-18: Framework of Informed Consent and Ethical Codes for Clinical Trials Especially Designed for Assisted Reproduction
Background Clinical trials are known as the most valid medical research. It is able to promote medical evidences on prevention, diagnosis, screening, treatment, and quality of life because in this type of study, an intervention is intentionally performed on subjects. Therefore, it encompasses ethical concerns and considerations, especially when human subjects are studied. In other words, clinic...
متن کاملFacilitating the ethical use of health data for the benefit of society: electronic health records, consent and the duty of easy rescue
Advances in data science allow for sophisticated analysis of increasingly large datasets. In the medical context, large volumes of data collected for healthcare purposes are contained in electronic health records (EHRs). The real-life character and sheer amount of data contained in them make EHRs an attractive resource for public health and biomedical research. However, medical records contain ...
متن کاملEthical governance in biobanks linked to electronic health records.
In the last years an alternative to traditional research projects conducted with patients has emerged: it is represented by the pairing of different type of disease biobanks specimens with Electronic Health Records (EHRs). Even if informed consent remains one of the most contested issues of biobank policy, other ethical challenges still require careful attention, given that additional issues ar...
متن کاملiCONCUR: informed consent for clinical data and bio-sample use for research
Background Implementation of patient preferences for use of electronic health records for research has been traditionally limited to identifiable data. Tiered e-consent for use of de-identified data has traditionally been deemed unnecessary or impractical for implementation in clinical settings. Methods We developed a web-based tiered informed consent tool called informed consent for clinical...
متن کاملEthical Considerations Related to Return of Results from Genomic Medicine Projects: The eMERGE Network (Phase III) Experience
We examined the Institutional Review Board (IRB) process at 9 academic institutions in the electronic Medical Records and Genomics (eMERGE) Network, for proposed electronic health record-based genomic medicine studies, to identify common questions and concerns. Sequencing of 109 disease related genes and genotyping of 14 actionable variants is being performed in ~28,100 participants from the 9 ...
متن کامل