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Confidentiality, consent and medical ethics news

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Last Gift Study: Community Perspective on End-of-Life HIV Research

In the second of this 3-part series, Sara Gianella Weibel, MD, on behalf of Infectious Disease Advisor, talks with Jeff Taylor, community activist and long-term HIV survivor, about ethical concerns and practical barriers in end-of-life research and how the HIV community will embrace this type of research.

Published
21 June 2017
From
Infectious Disease Advisor
Last Gift Study: End-of-Life HIV Research

Few opportunities currently exist for terminally ill people to participate in HIV research as a result of various cultural taboos and ethical concerns, such as exploitation, vulnerability, and coercion. However, when faced with their approaching death, some individuals may be willing to participate in research that offers no hope for their condition to leave a final gift to their community.

Published
21 June 2017
From
Infectious Disease Advisor
Public Health England sounds data sharing warning

Health chiefs have joined a protest over NHS data sharing rules, warning that asylum seekers, refugees and migrants will be deterred from seeking treatment. Public Health England (PHE) fears the handing over to the Home Office of personal data from patients - as part of a Government crackdown on illegal immigration – will have “unintended serious consequences”.

Published
31 May 2017
From
UK Authority
Indonesian authorities publicly released the results of HIV tests forced on 14 gay men

Human Rights Watch have released a statement denouncing the treatment of the men, stating that the police continue to violate the rights and privacy of LGBTQI people in Indonesia.

Published
11 May 2017
From
SBS
HIV blood disaster: UK families search for the truth

Jason Evans says his father was killed by contaminated blood that the government "knew was dangerous". In what is understood to be the first case of its kind, Jason is taking legal action against the government for its role in his father's death. More than 2,000 people – mostly haemophiliacs – have died after being infected with HIV and hepatitis C through blood treatments in the 1980s.

Published
10 May 2017
From
BBC
WHO issues ethics guidance to protect rights of TB patients

New tuberculosis (TB) ethics guidance, launched today by the World Health Organization (WHO), aims to help ensure that countries implementing the End TB Strategy adhere to sound ethical standards to protect the rights of all those affected.

Published
23 March 2017
From
World Health Organization
How to Keep HIV Cure-Related Trials Ethical: The Benefit/Risk Ratio Challenge

While high or unknown risks are a mainstay of early-phase trials in areas like cancer research, cure study participants typically have a safe and efficacious alternative to those risks: remaining on antiretrovirals. Can we justify asking patients who are doing well on antiretrovirals to accept the risk and uncertainty of many HIV cure-related trials? If we cannot, we might need to give up on the hope of curing HIV, or of achieving controlled remission.

Published
22 February 2017
From
BMJ Blogs
UK Ministers Accused Of "Out-Trumping Trump" Over Use Of Health Data To Track Alleged Illegal Immigrants

The NHS and the Home Office signed a secret deal to hand over addresses of people accused of immigration offences – causing leading charities to warn of serious health risks.

Published
13 February 2017
From
BuzzFeed
In the search for an HIV cure, David Evans explains “freedom” and how to better involve women & people of color

David Evans, director of research advocacy at Project Inform, talks about an ambitious HIV cure social science research project that will investigate some of the ethical and moral dilemmas cropping up in HIV cure research.

Published
09 February 2017
From
BETA blog
NHS hands over patient records to Home Office for immigration crackdown

Number of government requests to access confidential non-clinical details rises threefold since 2014 in drive to track down immigration offenders

Published
25 January 2017
From
The Guardian
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Community Consensus Statement on Access to HIV Treatment and its Use for Prevention

Together, we can make it happen

We can end HIV soon if people have equal access to HIV drugs as treatment and as PrEP, and have free choice over whether to take them.

Launched today, the Community Consensus Statement is a basic set of principles aimed at making sure that happens.

The Community Consensus Statement is a joint initiative of AVAC, EATG, MSMGF, GNP+, HIV i-Base, the International HIV/AIDS Alliance, ITPC and NAM/aidsmap
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This content was checked for accuracy at the time it was written. It may have been superseded by more recent developments. NAM recommends checking whether this is the most current information when making decisions that may affect your health.

NAM’s information is intended to support, rather than replace, consultation with a healthcare professional. Talk to your doctor or another member of your healthcare team for advice tailored to your situation.