Review

Authors: Felix Gille, Effy Vayena, Alessandro Blasimme...

Good biobank governance implies-at a minimum-transparency and accountability and the implementation of oversight mechanisms. While the biobanking community is in general committed to such principles, little is known about precisely which governance strategies biobanks adopt to meet those objectives. We conducted an exploratory analysis of governance mechanisms adopted by research biobanks, including genetic biobanks, located in Europe and Canada. We reviewed information available on the websites of 69 biobanks, and directly contacted them for additional information. Our study identified six types of commonly adopted governance strategies: communication, compliance, expert advice, external review, internal procedures, and partnerships. Each strategy is implemented through different mechanisms including, independent ethics assessment, informed consent processes, quality management, data access control, legal compliance, standard operating procedures and external certification. Such mechanisms rely on a wide range of bodies, committees and actors from both within and outside the biobanks themselves. We found that most biobanks aim to be transparent about their governance mechanisms, but could do more to provide more complete and detailed information about them. In particular, the retrievable information, while showing efforts to ensure biobanks operate in a legitimate way, does not specify in sufficient detail how governance mechanisms support accountability, nor how they ensure oversight of research operations. This state of affairs can potentially undermine biobanks' trustworthiness to stakeholders and the public in a long-term perspective. Given the ever-increasing reliance of biomedical research on large biological repositories and their associated databases, we recommend that biobanks increase their efforts to future-proof their governance.

Topics: Biological Specimen Banks; Communication; Confidentiality; Databases, Factual; Government Regulation; Health Policy; Humans

PubMed: 32424324
DOI: 10.1038/s41431-020-0646-4

Authors: Abhijit M Bal

Confidentiality underpins the trust between doctors and patients. As far back as the 2nd century BC, the great Indian physician, Charak, had stated: "Nothing that happens in the house of the sick man must be told outside, nor must the patient's condition be told to anyone who might do harm by that knowledge to the patient or to another".

Topics: Confidentiality; Disclosure; Ethics, Medical; Humans; India; Mobile Applications; Physician-Patient Relations; Physicians; Privacy; Trust

PubMed: 28190792
DOI: 10.20529/IJME.2017.016

Review

Authors: Dominic Malcolm

This article synthesizes existing literature to provide a summary of the ethical issues concerning patient confidentiality in sport. It outlines the medical principle of confidentiality and identifies cross-cultural ethicolegal variations that shape its implementation. Clinicians' multiple obligations, physical environments, and practice and policy contexts are discussed, and research detailing experiences of maintaining patient confidentiality in sport is reviewed. Policy recommendations for enhancing compliance with this ethical principle are summarized. It is argued that the context of sport exacerbates pressures on clinicians to break patient confidentiality, breaches occur regularly, and interventions are required to enhance ethical compliance in sports medicine.

Topics: Confidentiality; Conflict of Interest; Cross-Cultural Comparison; Doping in Sports; Health Policy; Humans; Physician's Role; Physician-Patient Relations; Sports Medicine; United States

PubMed: 26832971
DOI: 10.1016/j.csm.2015.10.006

Authors: Leslie E Wolf, Laura M Beskow

Topics: Confidentiality; Databases, Genetic; Genomics; Humans

PubMed: 31239559
DOI: 10.1038/s41436-019-0592-0

Review

Authors: Naomi A Schapiro, Jayme Mejia

Adolescent access to reproductive health services, mental health services, and treatment of drug and alcohol use depends on teens' rights to consent and confidentiality in the state in which they live. This article reviews the history, current practices, and potential challenges to confidentiality, including Title X funding, questions about brain development and ability to make autonomous choices, and meaningful use practices in electronic records. Resources are provided for professional position statements and individual state regulations.

Topics: Adolescent; Adolescent Health Services; Confidentiality; Female; History, 20th Century; Humans; United States; Women's Health

PubMed: 29779509
DOI: 10.1016/j.cnur.2018.01.002

Authors: Sara Bird

Recently the right of adolescents to confidential health care has come under threat. In 2004, the Minister for Health proposed the introduction of legislation to give parents access to all information held by Medicare Australia (formerly the Health Insurance Commission) concerning their child/ren under 16 years of age. Ultimately this legislation was withdrawn in the face of concern that it would have been detrimental to the health of adolescents. This article examines the duty of general practitioners to maintain confidentiality when treating adolescent patients. Case histories are based on actual medical negligence claims or medicolegal referrals, however, certain facts have been omitted or changed by the author to ensure the anonymity of the parties involved.

Topics: Adolescent; Adolescent Health Services; Australia; Confidentiality; Contraceptive Agents, Female; Ethics, Medical; Female; Humans; Mother-Child Relations; Physician-Patient Relations; Sexual Behavior

PubMed: 17676192
DOI: No ID Found

Review

Authors: Anna Graham

In 2001 the government produced the first ever National strategy for sexual health and HIV. The strategy called for a broader role for general practice in the promotion of better sexual health. Surveys undertaken in the United Kingdom (UK) in recent years suggest that more people have more sexual partners than ever before. This has been associated with a rise in sexually transmitted infections (STIs). Screening and testing for Chlamydia trachomatis have become more widespread in the UK. Risk assessment and sexual history taking are described. They need to be carried out confidentially and non-judgmentally. Confidentiality training for all staff, including a requirement to sign confidentiality statements, is recommended. Partner notification can be done in a variety of different settings including general practice. A new course for those working in primary care has been devised, aiming to equip participants with the basic knowledge, skills, and attitudes for the effective management of STIs.

Topics: Confidentiality; Contact Tracing; Contraception; Family Practice; Humans; Reproductive Medicine; Risk Assessment; Sexual Behavior; Sexually Transmitted Diseases

PubMed: 15113524
DOI: No ID Found

Authors: D E Cooper

Topics: Complementary Therapies; Confidentiality; Minors; Parental Notification; Physician-Patient Relations; Trust; Truth Disclosure

PubMed: 4009641
DOI: 10.1136/jme.11.2.92

Authors: Ana Cristina Tietzmann

Topics: Bioethics; Confidentiality; Humans; Narcissism; Physician-Patient Relations

PubMed: 31389499
DOI: 10.1590/1806-9282.65.7.932

Review

Authors: Sanjana Pampati, Nicole Liddon, Patricia J Dittus...

Confidentiality protections are a key component of high-quality adolescent sexual and reproductive health (SRH) care. Research has shown that adolescents value confidentiality and are more likely to seek care and provide honest information when confidentiality protections are implemented. However, many adolescents do not receive confidential SRH care. We synthesize studies of adolescents, parents, and providers to identify confidentiality-related factors that may explain why adolescents do not seek care or receive confidential services when they do access care. We present themes relevant to each population that address individual-level knowledge, attitudes, and behaviors, as well as clinic-level characteristics such as protocols, billing mechanisms, and clinic type. These findings have the potential to inform intervention efforts to improve the delivery of confidential SRH care for young people.

Topics: Adolescent; Adolescent Health Services; Female; Health Knowledge, Attitudes, Practice; Humans; Informed Consent; Male; Parental Notification; Parents; Patient Acceptance of Health Care; Reproductive Health Services; Sexual Behavior

PubMed: 31227388
DOI: 10.1016/j.jadohealth.2019.03.021