Mapping Pathways is a multi-national project to develop and nurture a research-driven, community-led global understanding of the emerging evidence base around the adoption of antiretroviral-based prevention strategies to end the HIV/AIDS epidemic. The evidence base is more than results from clinical trials - it must include stakeholder and community perspectives as well.

Showing posts with label concerns. Show all posts
Showing posts with label concerns. Show all posts

09 February 2012

Ethical Concerns Raised: Human Experimention Without Subject's Consent

viaNature.com by Matthew Walter

The injections came without warning or explanation. As a low-ranking soldier in the Guatemalan army in 1948, Federico Ramos was preparing for weekend leave one Friday when he was ordered to report to a clinic run by US doctors.

Ramos walked to the medical station, where he was given an injection in his right arm and told to return for another after his leave. As compensation, Ramos's commanding officer gave him a few coins to spend on prostitutes. The same thing happened several times during the early months of Ramos's two years of military service. He believes that the doctors were deliberately infecting him with venereal disease.

Now 87 years old, Ramos says that he has suffered for most of his life from the effects of those injections. After leaving the army, he returned to his family's remote village, on a steep mountain slope northeast of Guatemala City. Even today, Las Escaleras has no electricity or easy access to medical attention. It wasn't until he was 40, nearly two decades after the injections, that Ramos saw a doctor and was diagnosed with syphilis and gonorrhoea. He couldn't pay for medication.

“For a lack of resources, I was here, trying to cure myself,” says Ramos. “Thanks to God, I would feel some relief one year, but it would come back.” Over the decades, he has endured bouts of pain and bleeding while urinating, and he passed the infection onto his wife and his children, he told Nature last month in an interview at his home.

Ramos's son, Benjamin, says that he has endured lifelong symptoms, such as irritation in his genitals, and that his sister was born with cankers on her head, which led to hair loss. Ramos and his children blame the United States for their decades of suffering from venereal disease. “This was an American experiment to see if it caused harm to human beings,” says Benjamin.

Ramos is one of a handful of survivors from US experiments on ways to control sexually transmitted diseases (STDs) that ran in semi-secrecy in Guatemala from July 1946 to December 1948. US government researchers and their Guatemalan colleagues experimented without consent on more than 5,000 Guatemalan soldiers, prisoners, people with psychiatric disorders, orphans and prostitutes. The investigators exposed 1,308 adults to syphilis, gonorrhoea or chancroid, in some cases using prostitutes to infect prisoners and soldiers. After the experiments were uncovered in 2010, Ramos and others sued the US government, and US President Barack Obama issued a formal apology. Obama also asked a panel of bioethics advisers to investigate, and to determine whether current standards adequately protect participants in clinical research supported by the US government.

When details of the Guatemalan experiments came to light, US health officials condemned them as 'repugnant' and 'abhorrent'. Last September, the Presidential Commission for the Study of Bioethical Issues went further, concluding in its report1, that “the Guatemala experiments involved unconscionable violations of ethics, even as judged against the researchers' own understanding of the practices and requirements of medical ethics of the day”

Read the Rest.


[Content that is linked from other sources is for informational purposes and should not construe a Mapping Pathways position.]

05 January 2012

Measuring quality of life concerns for people living with HIV

via Aidsmap, by Michael Carter

Fears about transmitting HIV to others, worries about the future, self-esteem problems, difficulty sleeping and treatment issues are now important quality of life concerns for people living with HIV that are not measured by existing resources, according to a report on a new quality of life measurement tool published in the online edition of the Journal of Acquired Immune Deficiency Syndromes.

The tool – called PROQOL-HIV (Patient Report Outcomes Quality of Life – HIV) - was developed with the participation of 152 HIV-positive patients in nine countries on five continents.

“PROQOL-HIV is a novel multidimensional HIV-specific HRQL [health-related quality of life] instrument that strives to be sensitive to socio-cultural context, disease stage and treatment in the HAART [highly active antiretroviral therapy] era,” write the authors. “Important new HRQL issues were uncovered from the culturally diverse experiences of PLWHA [people living with HIV/AIDS] in previously under-represented populations.”

Effective antiretroviral therapy has transformed the prognosis of many HIV-positive patients. However, people living with HIV still experience considerable changes in their health-related quality of life. Tools to measure such outcomes were developed in the era before potent HIV treatment became available. Moreover, they did not take account of the geographic, ethnic and cultural diversity of the epidemic.

Therefore an international team of investigators set out to develop a new instrument that was sensitive to the impact of HIV therapy, different diseases stages and applicable across settings. It derived from in-depth interviews conducted with patients living with HIV in 2007 and 2008. The patients were recruited in high-, middle- and low-income countries.
The interviews identified eleven broad areas of concern.

Read the rest.


[Content that is linked from other sources is for informational purposes and should not construe a Mapping Pathways position.]

20 June 2011

Understanding the barriers to PrEP uptake


While formulating PrEP strategies, it is imperative that we, the HIV/AIDS prevention community, take into account the target community's concerns. By understanding the possible barriers and coming up with solutions, we can help ensure maximum possible effectiveness.

As per the findings of a study conducted in Peru and published in the International Journal of STD and AIDS, significant barriers among at-risk groups include concerns about cost, efficacy, and side-effects. The study was conducted by a team of researchers from UCLA and Lima, Peru; it included female sex workers, male-to-female transgendered individuals, and MSM.

To know more, check out aidsmap's round-up of the study here and EurekAlert!'s detailed article here.

On a related note, the Mapping Pathways project is also in the process of trying to gather perspectives on these questions from folks in our current focus areas – the US, South Africa, and India. If you’re interested in new ways to prevent transmission of HIV – and want to help shape our project goals and deliverables – we encourage you to take a few minutes and fill in our survey.

Your efforts will be greatly appreciated!


[Content that is linked from other sources is for informational purposes and should not construe a Mapping Pathways position.]