Title

Ensuring an ethical future for HIV surveillance

Code

SY38

Session Type

Symposium

Format

Hybrid

CME accreditation

Yes

ROOM/CHANNEL

Room 511/Channel 7

Date Time

02 August 11:45 - 12:45

Moderators

Ruth LAIBON MASHA, National AIDS Control Council (NACC), Kenya
Charles HOLMES, Georgetown University, United States

Emerging tools for HIV surveillance (such as deep sequencing of virus with phylogenetic analysis, tests for recent acquisitions and mobile and mapping technologies) offer opportunities to better understand the epidemiology of HIV and efficiently focus public health interventions. However, they pose risks of identifying and blaming transmitters of HIV and of invading privacy and disclosing personal information. Maximizing the public health benefits of surveillance requires collection of social and behavioural data, along with biological samples, for both the individual and the community. In determining what is ethically acceptable, society will have to balance public health benefits and harms, ensure individual and community understanding and consent, and develop regulations to allow responsible and accountable surveillance using newly available tools and methods. Speakers in this session will review the opportunities and challenges posed by new surveillance methods and current thinking about their ethical use.

11:45 2 min	Introduction Ruth LAIBON MASHA, National AIDS Control Council (NACC), Kenya Charles HOLMES, Georgetown University, United States

11:47 8 min	The power of modern techniques in HIV surveillance Christophe FRASER, Big Data Institute, United Kingdom	Slides

12:03 8 min	Ensuring individual- and community-informed consent for HIV surveillance Peter GODFREY-FAUSSETT, London School of Hygiene and Tropical Medicine, United Kingdom	Slides

12:11 8 min	A community perspective on new surveillance methods Yvette RAPHAEL, APHA, South Africa

12:19 26 min	Q&A Ruth LAIBON MASHA, National AIDS Control Council (NACC), Kenya Christophe FRASER, Big Data Institute, United Kingdom Yvette RAPHAEL, APHA, South Africa Peter GODFREY-FAUSSETT, London School of Hygiene and Tropical Medicine, United Kingdom Charles HOLMES, Georgetown University, United States

AUTHOR

Nicolas Ritter

SUMMARY

This symposium highlighted the opportunities and challenges those new technologies present for epidemiological surveillance and virus research. Ethical and community engagement issues are central to improving the collection of data that contribute significantly to an effective biomedical and social response.

HIGHLIGHTS

Using the U=U campaign as an example, Professor Christopher Fraser of Oxford University and member of the PANAGEA-HIV consortium highlights the importance of the powerful partnership between activism, science and public health that is now allowing a strong mobilization around the incredible power of antiretroviral treatment to block the virus and its transmission. Professor Peter Godfrey-Fausset (UK) went on to discuss the ethical issues related to data collection in the case of epidemiological surveillance and the necessary balance between the harms and benefits that this could generate. Finally, Yvette Raphael a South African activist living with HIV, strongly advocated that the issue of informed consent and participation of the communities concerned should be central to any data collection concerning them. It is indeed essential that these programs be "empowering, inclusive and non-stigmatizing" she said.

CRITICAL ASSESSMENT

Surveillance and epidemiology are important tools, but it is important to take a step back and build quality community partnerships to avoid the possibility of misuse of the data collected. New technologies are making considerable progress in the response to pandemics however those progresses must not be made at the expense of people who are already highly stigmatized or even criminalized.