Living Donors and the Issue of “Informed Consent”
Susan E Lederer
Hastings Center Report, November 2020; 50(6) pp 8-9
Abstract
This essay considers the issue of informed consent as it arose in the context of 1960s living kidney donors. In one of the earliest empirical inquiries into informed consent, psychiatrists Carl H. Fellner and John R. Marshall interviewed donors about their decision-making process and their experience and reflections on donorship. In their much-cited 1970 paper, the physicians reported that living donors, rather than reaching a reasoned, intellectual, and unemotional decision about donating a kidney (as stipulated in the Ethical Guidelines for Organ Transplantation issued by the American Medical Association’s Judicial Council), instead made instantaneous and “irrational” decisions about participation. Fellner and Marshall’s studies contributed to the public debate and professional discussion about the moral and ethical dimensions of donorship, even as they challenged the developing consensus on informed consent.

Consent to Data Linkage in LSAC
Dinusha Bandara, Michelle Silbert, Galina Daraganova
International Journal of Population Data Service, November 2020
Abstract
Introduction
   Linking the existing longitudinal data assets with administrative datasets provide the opportunity to transform longitudinal data into valuable assets to inform research and policy development.
Objectives and Approach
   This paper will focus on Growing Up in Australia: The Longitudinal Study of Australian Children (LSAC) data linkage landscape and consents which are invaluable for the development of evidence-based health-social-economic policies.
Results
    LSAC is Australia’s first nationally-representative longitudinal study of child development. Since 2004, two cohorts of 5,000 children and their parents have been interviewed every two years (B (baby) cohort and K (kindergarten) cohort). Over the years, multiple data linkage has been undertaken based on either parental consent or study child consent.
    In 2004 parents were asked to consent on behalf of the study child to link Medicare Benefits Schedule (MBS), Pharmaceutical Benefits Scheme (PBS)/Repatriation Pharmaceutical Benefits Scheme (RPBS) and Australian Childhood Immunisation Register (ACIR) administrative data to LSAC. The consent rate was 93% was for MBS, PBS and ACIR. Nearly 90% of B cohort parents provided consent to link Australian Early Development Census (AEDC)/National Assessment Program – Literacy and Numeracy (NAPLAN) and 95.4% of K cohort parents provided consent to link NAPLAN.
    Then ten years later, children in the K cohort were asked to consent to MBS/PBS and income-support administrative data. The rates were 86.6% for MBS, 85.4% for PBS and 81.2% for income-support administrative data. Parental consent to link their MBS, PBS and income-support administrative data was also sought and these rates varied between 60% to 88%.
Conclusion/Implications
    The discussion will focus on differences in consent rates by time of consent, consenting individual and type of administrative data to be linked. Challenges and considerations that researches should be aware of when designing the linkage consent methodology will also be discussed.

Informed consent for patient data processing in electronic health records
M M H Jayasekara
Primary Health Care, 2020; 10(5)
Abstract
Objective
To report the results of a systematic review of national Health policies of different countries in relation to patient consent in patient data processing in electronic health records
Method
Health policies of 19 (14.07%) countries are reviewed with regard to patient consent, from a total of 135 countries that are indexed in the World Health Organization Directory of eHealth Policies. 68 (50.37%) policies were excluded based on language and 67 policies in English were selected for further consideration. These 67 (49.62%) policies were further evaluated resulting in exclusion of 43 (31.85%) policies due to policies being outdated and 5 (3.70%) due to broken links. Finally, a total of 19 (14.07%) countries were selected for the review.
Results
57.89% out of 19 countries require patients’ informed consent to store patient data, 26.32% allow selective storage of patient data as defined by the patient, 89.47% require patients’ informed consent when sharing or transferring or accessing patient data, 68.42% of the countries allow patients access their own EHR, 73.68% facilitate correction/modification in EHR, and 26.32% facilitate deletion of patient records. 89.47% of countries highlight mechanisms to assure privacy and security of EHR.
Conclusion
Policymakers’ emphasis on various ethical concerns raised by EHRs has been increased highlighting patient rights related to eHealth as well as the requirement for compliance to different standards and regulations. eHealth policies must address requiring patients’ informed consent in processing of patient data whereas patients have the ability to grant or withhold consent to different processing operations related to their EHR. Furthermore, facilitating patients with access to their own records, facilitating patients with modification, correction and deletion of EHR are widely discussed topics.