This investigation explored the role of informational and psychological privacy in the health context by examining the relationship between type of relationship (physician versus acquaintance), type of observation (self-report versus observation), and communication strategies used to restore or preserve privacy (interaction control, dyadic strategies, expressions of negative arousal, blocking and avoidance, distancing, and confrontation). It was hypothesized and confirmed that individuals report exhibiting more behaviors to restore or preserve informational privacy in response to an informationally privacy-invasive question posed by an acquaintance than by a physician. The hypothesis that presentation of an informationally privacy invasive question by the physician causes patients to exhibit more communication strategies after the privacy invasive question than before, was unsupported. Finally, the hypothesis that individuals actually exhibit more privacy restoration behaviors than they report using in a similar situation with their physician was also unsupported. Patients reported using more communication strategies than they actually exhibited. One confound to the self reports was that videotaped participants reported the use of fewer direct privacy restoring communication strategies than non-videotaped.

Because of its perceived ability to predict future health and its relevance for family members, genetic information challenges the traditional justifications for medical confidentiality. This thesis examines the question whether a health care professional should have the discretion or a duty to breach confidentiality in order to inform a patient's relatives of their increased genetic risk. There is currently no exception to the statutory, common law and ethical duties of confidentiality for the non-consensual disclosure of genetic information to relatives. Precedents developed in the context of threats of harm and communicable diseases are of limited value. The law should not recognise the existence of a duty to warn in the context of genetics. As a last resort, health care professionals should be authorized, but not required, to disclose genetic risk information when there is a serious risk of preventable harm and when the potential harm of non-disclosure outweighs that of disclosure.

No description available.

Background. In the United States, adolescents are the age group least likely to be aware of their HIV infection and linked to care in a timely manner, contributing to disproportionately low rates of viral suppression and increased risk of transmitting HIV to others. A major barrier to health care for adolescents relates to confidentiality concerns, such as fears that parent/guardian consent will be required or that parents, guardians, or others will be informed of test results. This suggests that state laws related to confidentiality in sexual and reproductive health services could influence their HIV testing practices. Guided by Andersen’s Behavioral Model of Health Services Use, this dissertation utilizes a large, representative sample of sexually active high school students from the 2019 state-level Youth Risk Behavior Surveillance System (YRBSS) to investigate the potential impact of five state-level confidentiality-relevant laws on U.S. adolescents’ HIV testing practices. Methods. Data on HIV testing and individual characteristics (i.e., potential individual-level confounders/covariates) were aggregated from 25 states that participated in the 2019 state-level YRBSS. Data on contextual characteristics (i.e., potential state-level confounders/covariates) were obtained from the United States Census Bureau and the Behavior Risk Factor Surveillance System. Information about state-level confidentiality-relevant laws was compiled from the Guttmacher Institute and the Center for HIV Law and Policy to create five variables indicating whether state laws were confidentiality-promoting at the time of the 2019 state-level YRBSS. Multilevel logistic regression was used to test the following hypotheses: 1. After adjusting for individual and contextual characteristics, confidentiality-promoting state laws will be positively associated with HIV testing among sexually active U.S. high school students, such that odds of self-reported lifetime HIV testing will be significantly higher when states (a) explicitly allow minors to consent to HIV testing, (b) do not have age of consent requirements, (c) do not permit parental/guardian notification, (d) protect the confidentiality of minors insured as dependents, and (e) do not have HIV-specific criminal laws that require disclosure to sexual and/or needle-sharing partners, as compared to states with non-confidentiality-promoting laws. 2. After adjusting for individual and contextual characteristics, sex will moderate the relationship between state-level confidentiality-relevant laws and HIV testing among sexually active U.S. high school students, such that associations between confidentiality-promoting state laws and self-reported lifetime HIV testing will significantly differ between males and females. 3. After adjusting for individual and contextual characteristics, young men who have sex with men (YMSM) status will moderate the relationship between state-level confidentiality-relevant laws and HIV testing among sexually active male high school students, such that associations between confidentiality-promoting state laws and lifetime HIV testing will be significantly stronger among males who report same-sex sexual contact than among males who report opposite-sex sexual contact only. Results. Findings supported the first hypothesis that parental notification not being permitted would be positively associated with HIV testing among sexually active U.S. high school students. After adjusting for individual (i.e., sex, grade level, race/ethnicity, sexual identity) and contextual (i.e., percentage of the state population aged 25 and older with a high school diploma or higher, median household income, lifetime HIV testing among adults) characteristics, odds of self-reported lifetime HIV testing were significantly higher in states that do not permit parent/guardian notification (adjusted odds ratio [aOR]: 1.07; 95% confidence interval [CI]: 1.04-1.11; p<.001) than in states that allow health care providers to inform parents or guardians that their child is seeking or receiving STI services. However, results did not support the hypothesis that the other confidentiality-promoting state laws would be positively associated with HIV testing among sexually active U.S. high school students; as compared to states with non-confidentiality-promoting laws, odds of self-reported lifetime HIV testing were significantly lower in states that explicitly allow minors to consent to HIV testing, do not have age requirements to consent to HIV testing, and do not have HIV-specific criminal laws that require disclosure. Results supported the second hypothesis that sex would moderate the relationship between state-level confidentiality-relevant laws and HIV testing among sexually active U.S. high school students, as associations between confidentiality-promoting state laws and lifetime HIV testing differed significantly between males and females. After adjusting for individual and contextual characteristics, the effects of living in a state without age requirements or HIV-specific criminal laws with disclosure requirements on lifetime HIV testing for females were 1.53 (CI: 1.07-2.20; p=.020) and 1.56 (CI: 1.16-2.10; p=.003) times those of males, respectively. Meanwhile, the effects of state laws that explicitly allow minors to consent to HIV testing, do not permit parental notification, and protect the confidentiality of minors insured as dependents on lifetime HIV testing for females were 0.73 (CI: 0.55-0.96; p=.025), 0.72 (CI: 0.52-0.99; p=.043), and 0.66 (CI: 0.48-0.90; p=.008) times those of males, respectively. Analyses with these data failed to reject the null hypothesis for the third [alternative] hypothesis that associations between confidentiality-promoting state laws and self-reported lifetime HIV testing would be significantly stronger among sexually active males who report same-sex sexual contact than among males who report opposite-sex sexual contact only. Conclusions. Findings provide evidence that parental notification not being permitted is associated with significantly increased odds of lifetime HIV testing among sexually active U.S. adolescents, and that sex differentially affects associations between state-level confidentiality-relevant laws and sexually active U.S. adolescents’ HIV testing practices. Parental/guardian notification not being permitted may increase access to and utilization of HIV testing among sexually active U.S. adolescents. Furthermore, confidentiality-promoting laws – particularly those that explicitly include HIV testing in the package of STI services to which minors may consent, do not permit health care providers to notify parents/guardians that their child is seeking or receiving STI services, and protect the confidentiality of minors insured as dependents – may facilitate access to and utilization of HIV testing for sexually active male adolescents. Altogether, this dissertation provides compelling preliminary evidence for efforts to better understand and address structural determinants of HIV and HIV prevention among sexually active U.S. adolescents. Results underscore the need for a comprehensive, multi-level approach to adolescent HIV prevention that goes beyond a focus on reducing individual-level risk factors to increase protective factors at the structural level (e.g., confidentiality-promoting state laws). To address HIV-related health inequities among young people in the United States, advocates must fight for the passage of state laws that protect adolescents’ right to confidential sexual and reproductive health care.

Law / LL.M.

Thesis (M.Phil.)--Stellenbosch University, 2000. / ENGLISH ABSTRACT: AIDS is the most important threat to world health. Recent years have seen a dramatic spread of HIVand AIDS in South Africa. Health education directed at modifying risk behaviour appears to be the only way in which the disease can be contained. Controlling AIDS is not only by controlling the virus, but also involves tackling social, economic and political issues and putting AIDS into the broader context of sexuality and gender roles. This requires a broader understanding of this aspect of HIV-AIDS ranging from population dynamics, through to research on individual behaviour and its socio-economic impact; so that we can dispel the myths and rumours that surround AIDS and answer searching questions that will be asked by the community. In South Africa, HIV-AIDS remains a stigmatized disease. There have been calls from courageous and influential people for those who are living with HIV-AIDS to be open about their status and to destigmatise the disease. Institutions too have been drawn into the controversy about whether to remain silent or speak out. Southern African Anglican bishops, as well as some politicians declared their intention to undergo testing for HIV status in order to sensitise the public to the seriousness of the epidemic. Were AIDS not regarded as intolerable, the entire issue of confidentiality would fall away. Calls to destigmatise the disease through openness cannot stand alone. Government must put effective treatment programmes in place. In the absence of treatment, AIDS may represent only frustration and hopelessness to those who test positive; and fear, danger and resultant animosity to those who are HIV negative. The text is in four chapters. Chapter 1 focuses on confidentiality as an important principle in the management of disease. In HIV -AIDS, confidentiality is a more sensitive issue as AIDS is particularly viewed as a social stigma, accompanied by discrimination and harassment. The chapter also addresses HIV infection, transmission, counseling and screemng. Chapter 2 deals with the principles of biomedical ethics namely, autonomy, to enable the patient to determine his/her course of treatment; informed consent, designed to protect the interests of patients from exploitation and harm, and encourage health professionals to act responsibly; beneficence and nonmaleficence, to protect the welfare of others; and justice, to ensure access to health care for all. It also highlights the aspects of and limitations to confidentiality. Chapter 3 discusses broadly the ethical dilemmas pertammg to professional-patient relationships, women and HIV-AIDS, religion, prisoners and employer-employee relationships. When the AIDS epidemic started, very few people suffered from the disease, and the disease was treated with great caution and confidentiality. Today, AIDS is a pandemic and emphasis should shift from the ethic of autonomy and confidentiality, to a social ethic, which emphasizes the responsibility of minimizing the risk of spread of infection. The chapter also examines the role of the Department of Health, the participation of health professional bodies and the legal aspects relating to confidentiality in HIV-AIDS. Chapter 4 attempts to construct an argument to destigmatise HIV-AIDS by arguing the responsibility of the government to make sufficient resources available for the treatment and control of the pandemic. Health professionals are challenged to engage their expertise and skills in the service of the sick with dignity and respect. The community is encouraged to support the drive towards controlling the spread of HIV infection and enable people living with AIDS to disclose their status without fear of harassment. / AFRIKAANSE OPSOMMING: Vigs is die gevaarlikste bedreiging van wéreldgesondheid. Die afgelope paar jaar het 'n dramatiese verspreiding van mv en VIGS in Suid-Afrika plaasgevind. Gesondheidsopvoeding wat gemik is op die verandering van risiko-gedrag is skynbaar die enigste metode wat die siekte kan beheer. Die kontrolering van VIGS is nie net die kontrolering van die virus nie, maar dit betref ook herbesinning oor sosiale, ekonomiese en politiese en geslagsrolle. Dit vereis 'n omvattender verstaan van hierdie aspek van HIV-VIGS, wat strek vanaf van bevolkingspatrone tot by die navorsing oor individuele gedrag en die sosio-ekonomiese impak van 19. So kan ons hopelik help om die mites rondom VIGS te besweer. In Suid-Afrika bly mV-VIGS 'n gestigmatiseerde siekte. Daar rus 'n veranbtwoordelikheid op invloedryke mense wat met mV-VIGS leef en wat as rolmodelle sou kon dien, om hul mv -status te openbaar en sodoeonde te help om die siekte te destigmatiseer. Instansies is ook by hierdie twispunt betrek om vas te stelof die mense moet praat of swyg. Suider-Afrikaanse Anglikaanse Biskoppe, asook somige politici het hulle intensies aangekondig om die mv -toets te ondergaan om sodoende die publiek te help opvoed oor die gevaar van hierdie epidemie. Oproepe om die siekte te destigmatiseer deur openbaarheid kan nie in isolasie funksioneer nie. Die staat moet effektiewe kuratiewe en voorkomingsprogramme hier rondom loods en kontinueer. In die afwesigheid van 'n geneesmiddel, sal VIGS slegs frustrasie, hopeloosheid, en vrees skep by diegene wat positief getoets is, sowel as vyandigheid onder diegene wat nie mv positief is nie. Die teks het vier hoofstukke. Hoofstuk 1 fokus op vertroulikheid as 'n belangrike beginsel in die bestuur van die siekte. In mV-VIGS is vertroulikheid 'n meer sensitiewe beginsel aangesien VIGS in die besonder as 'n sosiale skandvlek, aangevreet deur diskriminasie, gesien word. Die hoofstuk bespreek ook mv -infeksie, transmissie, raadgewing en toetsing. Hoofstuk 2 gaan oor die beginsels van die biomediese etiek, naamlik, outonomie, waaronder ingeligte toetstemming, ontwerp om die belange van die pasiente te beskerm teen eksploitasie en gevaar: om gesondheids professionele aan te moedig om hulle op 'n verantwoordelike manier te gedra. Ander beginsels is goedwilligheid en niekwaadwiligheid om die welsyn van ander te beskerm, asook geregtigheid, om toegang tot gesondheidshulp vir almal te verseker. Dit beklemtoon ook die aspekte verwant aan beperkinge tot vertroulikheid. Hoofstuk 3 bespreek breedweg die etiese dilemmas met betrekking tot die verhouding tussen pasiënye en professionele gesondheidswerkers, vrouens en mV-VIGS, godsdiens, gevangenes en werkgewer-werker verhoudings. Toe die VIGS-epidemie begin het, het min mense aan die siekte gely, en die siekte is met groot sorg en vertroulikheid behandel. Vandag is VIGS 'n pandemie en die klem moet geskuif word vanaf outonomie en vetrouilikheid na 'n sosiale etos wat verantwoordlikheid en die vermindering van die risiko van die verspreiding van die infeksie beklemtoon. Die hoofstuk kyk ook na die rolle van gesondheidsdepartmente, deelname van gesondheids professionele organisasies en die juridiese aspekte met betrekking tot vertroulikheid van HIV-VIGS. Hoofstuk 4 poog om 'n argument te ontwikkel wat daartoe sou kon bydra dat HIV-VIGS gedestigmatiseer sal word. Klem word gelê op die verabtwoordelikheid van die staat om soveel moontlike bronne beskikbaar te stel vir die behandeling van en beheer oor hierdie pandemie. Gesondheids professionele word uitgedaag om hulle deskundigheid en bekwaamheid in die diens van die siekes met waardigheid en respek te gebruik. Die gemeenskap word aangemoedig om die poging tot die beheer van die verspreiding van die HIV -infeksie te ondersteun en om die mense wat met VIGS leef in staat te stelom hul status sonder die dreigement van stigmatisering bekend te maak.

Law / LL.M.

The purpose of this study is to investigate the right to confidentiality in the context of HIV/AIDS through an interdisciplinary lens. This study indicates that whilst confidentiality is important and should be preserved in order to protect persons living with HIV/AIDS against stigmatisation, discrimination and victimisation, this should be balanced by other equally important interests, such as the protection of public health and individual third parties who may be affected by the intentional or negligent infection of others with HIV. As the consideration of the legal issues relating to confidentiality and privacy cannot be divorced from the social context in which HIV/AIDS plays out in South African communities, the study will examine, amongst others, the victimisation, discrimination and stigmatisation experienced by persons living with HIV/AIDS, followed by a critical exploration of the present legal and ethical framework governing privacy and confidentiality, including medical confidentiality, as well as the duty to disclose a positive HIV-status, in the context of HIV/AIDS. Possible limitations on the right to privacy in this context are also examined, which include, amongst others, a consideration of making HIV/AIDS notifiable diseases in South Africa. The study suggests that it is imperative that legal interventions aimed at curbing the spread of HIV will need to be mindful of the unique social, cultural and economic forces that impact on the duty to disclose a positive HIV-status to partners and other affected third parties. Insights gained from philosophical theories relating to Africanism, individualism, communitarianism and utilitarianism are valuable tools in facilitating a clearer understanding of relevant social and cultural factors that keep South African society locked in the present stalemate with regard to the disclosure of HIV status. / Public, Constitutional, & International law / LLD

Thesis (MPhil)-- University of Stellenbosch, 2000 / ENGLISH ABSTRACT: It is a well-known fact that the sub-Saharan Africa is a continent most affected by HIV/AIDS. The HIV/AIDS pandemic has in other words become our disease. For many of us, this fact may be difficult to fully accept. There are elements of prejudice in our reactions. Ignorance and intolerance can be found around the world. Therefore, by presenting the facts about HIV/AIDS, this assignment challenges the misconceptions and focuses on the profound dilemmas confronting society. I think the success in combating the HIV/AIDS pandemic could be found in President Thabo Mbeki's terminology "Partnership against HIV/AIDS". In his speech, the President appealed to both the private and public sectors and all South Africans to work together with greater determination than before to fight against HIV infection and AIDS. Arguably, this was the best speech President Thabo Mbeki ever made on HIV/AIDS on October 9, 1998. Back then, the government seems to have had a direction and led from the front in the battle against HIV/AIDS. The title of this thesis reads: "Ethical perspectives on surveillance and preventive strategies for HIV/AIDS in South Africa". Presently, the South African Government through the Ministry of Health is seriously considering making AIDS a notifiable medical condition. This is a serious and a controversial move that has serious ethical and legal implications that will be discussed. Should partners of HIV-infected individuals be informed? If the answer is on the affirmative, who should inform them? I am also looking at the ethical obligation of health care workers to treat HIV/AIDS patients despite the fear of being accidentally infected. Tough questions need to be asked. Should health workers be informed of the HIV status of every patients they treat? On the other hand, some patients have some fears too that HIV-infected health professionals may infect them. Again, the fundamental ethical concerns related to confidentiality, privacy, the right to treatment will also be discussed. The country is divided on this issue. Ethical principles are directly involved in such a decision, for instance, the principle of confidentiality, respect for autonomy and informed consent. How can the government go about implementing this without disregarding these fundamental ethical requirements?Another ethical issue that comes to mind regarding HIV/AIDS concerns AIDS vaccine trials, which are so far dominantly manufactured in 'developed countries' while subjects of these trials are from 'third world' or 'developing countries '. The ethical concerns here are: How will informed consent be protected, especially where subjects of the trials are not educated and do not understand the terms used? What are the cost-effects or benefits of such trials? What are the risks involved? Together with this, other issues include ethical debates concerning market prices of drugs, which are too expensive for poorer countries and affordable for richer countries. Finally, this work does not treat everything that needs to be dealt with insofar as HIV/AIDS is concerned. However, I hope that this thesis will contribute (in a small way) in making people appreciate the ethical dilemmas that are presented by HIV/AIDS. / AFRIKAANSE OPSOMMING: Dit is algemeen bekend dat Afrika suid van die Sahara die gebied is met die hoogste voorkoms van MIV/vIGS. Die MIV/VIGS-pandemie het dus ons siekte geword. Dit is vir baie van ons moeilik om hierdie feit te aanvaar, en ons reaksies is dikwels bevooroordeeld. Onkunde en onverdraagsaamheid oor MIV/vIGS word trouens wereldwyd aangetref. Hierdie verhandeling Ie klem op die feite van MIV/VIGS, en konfronteer sodoende hierdie wanopvattings terwyl daar gefokus word op die diepgaande dilemmas waarmee die samelewing gekonfronteer word. President Thabo Mbeki se woorde "Vennootskap teen MIV/VIGS" verwoord myns insiens die enigste oplossing vir die MIV/VIGS-pandemie. Die President doen in sy toespraak 'n beroep op al1e Suid-Afrikaners, in private en openbare sektore, om met groter determinasie saam te veg teen MIV-infeksie en VIGS; Hierdie toespraak, gelewer op 9 Oktober 1998, toe die regering klaarblyklik nog rigting gehad het en op die voorfront was in die styd teen MIV/VIGS, was moontlik President Thabo Mbeki se beste ooit oor die onderwerp MIV/VIGS. Die titel van hierdie verhandeling is "Etiese perspektiewe ten opsigte van waarnemende en voorkomende strategiee vir MIV/VIGS in Suid-Afrika". Die Suid-Afrikaanse regering, by monde van die Ministerie van Gesondheid, oorweeg dit tans sterk om VIGS 'n aanmeldbare mediese kondisie te verklaar. Die ernstige etiese en regsimplikasies van so 'n daadwerklike en kontroversiele stap sal in die verhandeling bespreek word. Behoort die rnetgesel1e van MIV-positiewe persone ingelig te word? Indien wei, wie moet hulle in kennis stel? Daar sal ook gekyk word na die etiese verpligting van gesondheidsorgwerkers om MIV/VIGS-pasiente te behandel ten spyte van hul1e vrees om per ongeluk besmet te word. Indringende vrae moet gevra word. Behoort gesondheidsorgwerkers ingelig te word oor die MIV-status van elke pasient wat hul1e behandel? Aan die ander kant vrees sornmige pasiente dat hul1e deur MIV-positiewe gesondheisorgwerkers besmet kan word. Die fundamentele etiese aangeleenthede rakende vertroulikheid, privaatheid en die reg tot mediese behandeling sal ook bespreek word. Suid-Afrika is verdeeld oor hierdie kwessies. Etiese waardes, soos die beginsel van vertroulikheid, respek vir outonomie en ingeligte goedkeuring is direk betrokke by besluite oor etiese kwessies. Die regering kan nie hierdie aangeleenthede implementeer sonder om die fundamentele etiese vereistes in ag te neem nie. VIGS-entstofproefnemings is'n verdere etiese kwessie wat ter sprake kom. Hierdie proefnemings word grotendeels deur "ontwikkelde" lande uitgevoer, tewyl die proefpersone van "derdewereldse" of "ontwikkelende" lande afkomstig is. Die etiese kwessies hierby betrokke is: hoe sal ingeligte goedkeuring beskerm word, veral wanneer proefpersone onopgevoed is en nie die tersaaklike terme verstaan nie? Wat is die kosteeffektiwiteit of voordele van hierdie proefnemings? Watter risiko's is betrokke? Die etiese debat oor die markprys van medisyne, wat heel bekostigbaar vir ryk lande, maar duur vir armer lande is, word ook aangeraak. Hierdie verhandeling dek nie alle relevante kwessies wat betref MIV/VIGS nie. Tog hoop ek dat dit 'n bydrae sal lewer tot mense se bewuswording van die etiese dilemmas wat MIV/VIGS inhou.

The purpose of this study is to investigate the right to confidentiality in the context of HIV/AIDS through an interdisciplinary lens. This study indicates that whilst confidentiality is important and should be preserved in order to protect persons living with HIV/AIDS against stigmatisation, discrimination and victimisation, this should be balanced by other equally important interests, such as the protection of public health and individual third parties who may be affected by the intentional or negligent infection of others with HIV. As the consideration of the legal issues relating to confidentiality and privacy cannot be divorced from the social context in which HIV/AIDS plays out in South African communities, the study will examine, amongst others, the victimisation, discrimination and stigmatisation experienced by persons living with HIV/AIDS, followed by a critical exploration of the present legal and ethical framework governing privacy and confidentiality, including medical confidentiality, as well as the duty to disclose a positive HIV-status, in the context of HIV/AIDS. Possible limitations on the right to privacy in this context are also examined, which include, amongst others, a consideration of making HIV/AIDS notifiable diseases in South Africa. The study suggests that it is imperative that legal interventions aimed at curbing the spread of HIV will need to be mindful of the unique social, cultural and economic forces that impact on the duty to disclose a positive HIV-status to partners and other affected third parties. Insights gained from philosophical theories relating to Africanism, individualism, communitarianism and utilitarianism are valuable tools in facilitating a clearer understanding of relevant social and cultural factors that keep South African society locked in the present stalemate with regard to the disclosure of HIV status. / Public, Constitutional, and International law / LLD