Jul 24

Nuevas pautas de OMS sobre ética en la vigilancia de salud pública = New WHO guidelines on ethical issues in public health surveillance

PAHO/WHO Equity, Health and Human Development – Lista Equidad]

New WHO guidelines on ethical issues in public health surveillance = Nuevas pautas de OMS sobre ética en la vigilancia de salud pública

World Health Organization

Published online: 2017


The WHO Guidelines on Ethical Issues in Public Health Surveillance is the first international framework of its kind, it fills an important gap. The goal of the guideline development project was to help policymakers and practitioners navigate the ethical issues presented by public health surveillance. This document outlines 17 ethical guidelines that can assist everyone involved in public health surveillance, including officials in government agencies, health workers, NGOs and the private sector.

Surveillance, when conducted ethically, is the foundation for programs to promote human well-being at the population level. It can contribute to reducing inequalities: pockets of suffering that are unfair, unjust and preventable cannot be addressed if they are not first made visible. But surveillance is not without risks for participants and sometimes poses ethical dilemmas. Issues about privacy, autonomy, equity, and the common good need to be considered and balanced, and knowing how to do so can be challenging in practice.


Publication available in English / Publicación disponible en inglés – click here


* The author/source alone is responsible for the views expressed in this article/publication or information resource, and they do not necessarily represent the positions, decisions or policies of the Pan American Health Organization. El autor/fuente es el único responsable por las opiniones expresadas en este artículo/publicación o recurso de información y no necesariamente representan las posiciones, decisiones o políticas de la Organización Panamericana de la Salud.


Visit the Portal/Blog of the PAHO/WHO Equity List & Knowledge network : http://equity.bvsalud.org

Visite el Sítio/Blog de la Lista de Equidad y Red de Conocimiento: 

For additional information and to send contributions, please contact Mrs. Eliane P. Santos, Advisor, Library and Information Networks – KBR/ PAHO, Regional Office of the World Health Organization – pereirae@paho.org

Pan American Health Organization, Regional Office of the World Health Organization for the Americas – http://www.paho.org

Office of the Assistant Director. Area of Knowledge Management, Bioethics and Research (KBR)

Jul 24

Atlantic on zika vax ethics



The Atlantic (7/6, Beck, 21.27M) reports in a nearly 1,200-word piece that “a working group made up of bioethicists, OB/GYNs, vaccinologists and others recently released ethics guidelines for Zika vaccine development, in which they recommend that pregnant women should be included in clinical trials for Zika vaccines.” That working group “did around 60 consultations with experts…including speaking to people at the National Institutes of Health, which is currently testing several Zika vaccines that are in various stages of development.” Currently, “the Department of Health and Human Services’ regulations classify pregnant women as a ‘vulnerable population’ that needs special protection when participating in research.” Such women can be included, but HHS “regulations lay out 10 conditions that must be met when enrolling pregnant women in a research study.”

Jul 24

Coalition meeting, winning students, science and human rights news in the July Coalition Update!

Coalition Update | July 2017


Coalition Calendar

July 27-28: Coalition Meeting | Article 15 – the Right to Science

Register NOW! The Coalition meeting will focus on the right to enjoy the benefits of scientific progress and its applications. Presentations will include updates on the Coalition’s project to better define this right in international human rights discourse and opportunities for future involvement of Coalition members. Confirmed speakers include Mikel Mancisidor of the UN Committee on Economic, Social and Cultural Rights.

Coalition Accomplishments and Activities

Student Competitions Winners Announced

Congratulations to Miriam Aczel (Imperial College London) and Church Lieu (California State–Los Angeles), winners of the 2017 student essay competition, and to Vivekanand Vimal (Brandeis University), winner of the Coalition’s first digital media competition! Thank you to everyone who served as a judge for the competitions. More details about the winners are available here and here.

Work of Forensic Anthropology in Human Rights Highlighted by AAAS
AAAS MemberCentral recently profiled the work of 2016 student essay competition winner Julie Fleischman, a Ph.D. anthropology candidate at Michigan State University, whose research in forensic anthropology supports human rights efforts in Cambodia. Fleischman used her training in anatomy and anthropology as part of a team charged with cleaning, preserving, and analyzing skeletal remains from the mass graves of the victims of the Khmer Rouge regime under which nearly two million people were killed between 1975 and 1979. Her work focused on one site in Choeung Ek, and it helped establish the age and gender of the victims as well how they were killed. Her experience showed how scientific evidence plays a crucial role in putting forth an account of what happened, which then can be used as part of efforts to prevent mass violence and similar atrocities.


ASA Provides Update on Prosecuted Statistician

The American Statistical Association (ASA), through its Committee on Scientific Freedom and Human Rights, provided an update on Dr. Andreas Georgiou, who became president of the Hellenic Statistical Authority (ELSTAT) in August 2010, where he was responsible for producing public finance data on the Greek economy. In providing that data, which included an assessment of Greece’s budget deficit, he was subject to criminal and civil charges for slander, criminal complicity against the state, and violation-of-duty charges. He was acquitted in May 2017 of the charge of complicity against the state, which included allegations that he had artificially inflated the size of Greece’s budget deficit. This was the second time he was acquitted of those charges, but the state can further appeal. He is also now facing a second trial, scheduled for later in July, for a charge of violation-of-duty, a charge of which he had been acquitted in December 2016. The ASA notes that his data have been accepted many times since 2010 by Eurostat, the statistical office of the European Union.

SRCD Journal Publishes Research on Resilience of Refugee Adolescents

Child Development, a journal of the Society for Research in Child Development (SRCD), recently published an article that highlighted validated measures for assessing resilience in conflict settings. In particular, the article highlighted the Child and Youth Resilience Measure (CYRM) that was developed and tested in Jordan with Syrian refugees and Jordanian host-community adolescents. The study found that in assessing individual, family, and community-level dimensions of resilience, the CYRM is a useful measure for research and practice with refugee and host-community youth.

APA Underscores Importance of the Human Right to Psychological Science
In a recent article in its member newsletter, Psychology International, the American Psychological Association (APA) highlighted its support for and the importance of the recent March for Science, held in April, to underscore the importance of the right to psychological science and the role of psychologists in promoting human rights.

Opportunities for Input

Call for Comments: Performance Indicators for the International Criminal Court

The International Criminal Court (ICC) Forum, an online discussion hosted by the UCLA School of Law’s Human Rights Project in collaboration with the ICC Office of the Prosecutor, invites comments from experts regarding the ICC’s performance indicators. What are appropriate ways to measure the ICC’s progress towards its goals? How can the performance of the ICC as a whole be properly assessed?

Professional Development Opportunities

Work at AAAS – Director, Center of Science, Policy and Society Programs

AAAS is hiring a Director for the Center of Science, Policy and Society Programs (one of which is the AAAS Scientific Responsibility, Human Rights and Law Program). The Director will lead this AAAS Center in supporting the AAAS mission, with an emphasis on advocating for and contributing to activities that focus on the intersection of science and policy, as well as science and societal interest. Applications are due by July 30, 2017.


Call for Articles: Mental Health and Well-Being in Human Rights

The openGlobalRights blog has launched an online debate on the role of mental health and well-being in human rights. Authors conducting research in related areas are invited to submit articles between 700-1,000 words. Please contact Theresa Harris (tharris@aaas.org) if you would like to discuss an idea for an article before submission.

Aug. 21: Submission for Special Issue on Business and Human Rights
The Nordic Journal of Human Rights invites submissions for a special issue on research methods related to business and human rights (BHR) to be published in 2018. The special issue will focus on the interdisciplinary potential of BHR research by inviting contributions that develop new methods for research and analysis or pragmatically apply methods across academic disciplines.

Aug. 31: Call for Manuscripts: Human Rights and Infectious Diseases

A new cross-journal article collection in BMC International Health and Human Rights

and BMC Infectious Diseases is looking to highlight studies that illuminate human rights infringements as structural determinants of infectious diseases, including sexually transmitted infections. This includes epidemiologic studies, interventional outcomes leveraging implementation research, implementation research methods, mathematical modeling studies, and qualitative study of the contexts in which infectious disease programs are being implemented. Research to be considered for inclusion can be submitted directly to BMC International Health and Human Rights and BMC Infectious Diseases or you can email presubmission inquiries to Philippa.Harris@biomedcentral.com

Sept. 1: AAAS Award for Scientific Freedom and Responsibility

The AAAS Award for Scientific Freedom and Responsibility is presented annually by the American Association for the Advancement of Science (AAAS) to honor scientists and engineers whose exemplary actions have fostered scientific freedom and responsibility. More information about how to make a nomination is available here.


Sept. 28-29: Human Rights and the Arctic

The seventh Human Rights and Science Symposium, hosted by the Council of Finnish Academies, will discuss the human rights dimension in Arctic studies. The focal themes revolve around the rights of indigenous peoples, preconditions of scientific research in the Arctic, and the human rights perspectives in research and utilization of natural resources. While the program on September 28 is only for European science academy representatives, the event on September 29 is open to the public.

Nov. 5-17: Global Mental Health: Trauma and Recovery Certificate Program

The Harvard Program in Refugee Trauma’s (HPRT) Global Mental Health: Trauma and Recovery Certificate Program is seeking applicants. The training program offers a cultural and scientific learning experience to address the needs of traumatized persons or communities worldwide. The course involves a two-week learning program in Italy followed by five months of collaborative online learning. Certificates of completion are awarded by HPRT and the Harvard Medical School Department of Continuing Education.

Science and Human Rights in the USA
US Supreme Court Partially Reinstates Travel Ban

In late June, the US Supreme Court partially lifted the injunction on President Trump’s ban on entry for nationals of six Muslim-majority countries, allowing it to take effect except for in the cases of “foreign nationals who have a credible claim of a bona fide relationship with a person or entity in the United States.” The ruling indicates that students admitted to US universities, workers with job offers from US companies and lecturers with invitations to address US audiences all would qualify as having such a “bona fide relationship,” and therefore would not be subject to the reinstated travel ban. The Court will later hear arguments in October about President Trump’s executive order barring travel for 90 days for nationals of Iran, Libya, Somalia, Sudan, Syria, and Yemen.


Syrian Political Scientist’s Asylum Petition Mired by Definition of Terrorist Groups

Radwan Ziadeh, a political scientist of and previous fellow at Harvard, Georgetown, and the United States Institute of Peace, has been denied a request for political asylum in the US on the basis he provided “material support” to Syrian groups that the government considered undesignated terrorist organizations. At issue is a series of conferences he organized from November 2012 to May 2013 to discuss a democratic transition in Syria. Among those invited to the workshops, held in Istanbul, were self-described commanders in a loose confederation of rebel groups called the Free Syrian Army as well as political leaders affiliated with the Syrian Muslim Brotherhood, two groups supported by the US government. His case underscores gaps in US immigration law and foreign policy.

United Nations Committee Recommends US Action on Child Trafficking

The UN Committee on the Rights of the Child,  as part of its formal review of the US under two of the optional protocols to the Convention on the Rights of the Child, hasrecommended that the US take further action to combat child trafficking. Some key shortcomings that the US was recommended to address were: insufficient data collection and evidence-based research; lack of evaluation of training programs; underaddressing labor tracking; lack of primary prevention focus and efforts; and insufficient attention to address issues for refugees and migrant children.


International News 
Applying Modeling for Mapping Hidden Graves in Mexico

A recent article in Science chronicled the work of the Human Rights Program at Ibero-American University in Mexico, which is part of team that is identifying and documenting hidden graves in that country. The number of hidden graves have escalated due to increased drug violence. The team built a model using data from municipalities where hidden graves were reported in the media from 2013 to 2016 and classified each according to 35 geographic and socioeconomic variables, including murder rate, average level of education, and distance to the US border. The model then found municipalities with similar characteristics and determined the likelihood of whether they would contain hidden graves.


NASA Scientist Imprisoned in Turkey

A recent article in Foreign Policy details the imprisonment in Turkey of Serkan Golge, a Turkish-American who until last year was a senior research scientist at NASA, studying the effects of space radiation on humans in advance of an eventual mission to Mars.


New Reports and Resources

Nuremburg Betrayed: Human Experimentation and the CIA Torture Program
Physicians for Human Rights has issued a new report that examines the US Central Intelligence Agency’s (CIA) enhanced interrogation program used on US detainees following the September 1, 2001 terrorist attacks in the US. The report concludes that the CIA program rested on the flawed claim that torture could be useful in overcoming a person’s resistance to interrogation and in facilitating the collection of intelligence.


Ali Arab, a representative to the Coalition Council for the American Statistical Association, has been elected by the membership if Amnesty International USA to serve a three-year term on that organization’s Board of Directors.


Joel Ericsen joined the Secretariat staff at AAAS on July 10. Joel is taking on the responsibilities of former Program Assistant Ellen Platts, who will soon begin graduate studies in anthropology at the University of Maryland.

Publisher: AAAS Scientific Responsibility, Human Rights and Law Program

Editor: Patricia Van Arnum

Associate Editor: Mary Cate Carroll

Contributors: Theresa Harris, Ellen Platts, Jessica Wyndham


Jul 24

Ethical, Legal, and Social Implications (ELSI) of Genomics Small Research Grant Program

Ethical, Legal, and Social Implications (ELSI) of Genomics Small Research Grant Program

See the grant program announcement at:   https://grants.nih.gov/grants/guide/pa-files/PA-17-324.html

Research Objectives and Approaches

Continuing advances in genomic technology coupled with lowered sequencing costs have rapidly increased the numbers of people being sequenced, and are transforming biomedical research.  As knowledge of relationships between genetic variation and human diseases and traits proliferates, the distinctions between basic and clinical genomic research blur, and new findings are altering the practice of medicine.  Meanwhile information technologies – including personal mobile devices, patient health portals, electronic health records, and cloud storage are influencing the ways an individual’s genomic data are stored, analyzed, shared, and used in commercial, biomedical and non-medical settings. Taken together these developments may have profound effects on many long-standing societal beliefs and norms.

The ongoing evolution of genomic research and health care requires a continuing analysis of the legal and normative underpinnings of beliefs, practices and policies regarding research, health and disease.  In addition, as personal genomic information permeates many aspects of society, it has profound implications for how we understand ourselves as individuals and as members of families, communities, and society–and even for how we understand what it means to be human.  Long-held beliefs about the continuum between health and disease may be transformed, as will concepts of free will and responsibility.

To ensure that genomic research and medicine are built on a solid foundation, focused conceptual and analytical studies are needed that will address these basic issues.

For small projects that cannot be done within the constraints of an R03 budget –  especially those that are primarily exploratory in nature or designed to generate pilot data in preparation for a larger study – applicants should consider the ELSI R21 FOA (https://grants.nih.gov/grants/guide/pa-files/PA-17-323.html ), which provides a total of up to $275,000 in direct costs over two years.  For larger multi-disciplinary studies that are building on preliminary data and require funding beyond two years, applicants may wish to consider the ELSI Research Project Grant (R01) FOA (https://grants.nih.gov/grants/guide/pa-files/PA-17-325.html ), which provides funding for up to five years.

Applicants are strongly encouraged to contact ELSI program officials prior to developing an application.

Areas of Research Interest

The specific areas of research interest targeted through this FOA fall roughly into the following broad domains.  Examples of specific topics appropriate for exploration in each of these domains can be found on the ELSI Research Priorities website at: https://www.genome.gov/27543732/elsi-research-priorities/.

The Fogarty International Center (FIC) is interested in supporting research on ethical issues related to human genome research relevant to low and middle income countries, in particular, studies conducted by investigators in these countries

Genomic Research.  These projects may examine and address the ethical, legal, and social issues that arise in connection with the design and conduct of genetic and genomic research.  Research areas of particular interest include:

• Diversity of Research Populations

• Participant Rights and Engagement

• Informed Consent

• Re-identification, Security and Data Privacy

• Data Stewardship and Sharing

• Return of Research Results and Secondary Findings

• Boundaries Between Research and Clinical Care

• Legal and Regulatory Issues

Genomic Health Care.  These projects may examine and address the ethical, legal, and social issues that arise in connection with the translation of genetic and genomic research into clinical medicine and health care.  Research areas of particular interest include:

• Clinical and Personal Utility of Genomic Health Information

• Rights and Responsibilities of Patients and Providers

• Return, Communication and Use of Clinical Genomic Results and Secondary Findings

• Genomic Medicine in Diverse Healthcare Settings

• Genomics and Public Health

• Precision Medicine and Genomics

• Genomic Medicine and Health Disparities

• Economics of Genomic Medicine

• Legal and Regulatory Issues

Broader Legal, Policy and Societal Issues.  These projects may examine and address a range of broader legal, policy and bioethical and societal issues raised by the use of genomic technologies and information in research, clinical or non-medical settings.  Research areas of particular interest include:

• Genomic Equity and Social Justice

• Citizen Science & Consumer Genetics

• Non-Medical Uses of Genomics

• Downstream Implications of Emerging Genomic Technologies

• Genomics and Shifting Societal Definitions and Norms

• Genomics and Conceptions of Human Identity and Origins

• The Effect of Genetic Determinism on Attitudes, Behaviors and Policy

• The Role of Genetic Exceptionalism in Policy Development

Examples of specific topics appropriate for exploration in each of the three research domains can be found on the ELSI Research Domains website at: http://www.genome.gov/27543732.The research areas and possible research questions described at this website are provided as a general guide to areas of interest and should not be viewed as a comprehensive list of all possible research topics. As genomic research advances and as the interpretation and use of genomic information continues to evolve, applicants are encouraged to identify additional topics and issues ripe for research.

Many of the specific topics listed on the ELSI Research Domains website are relevant to the design and implementation of genomic research or genomic medicine studies and may be appropriately examined in conjunction with a variety of planned or ongoing genomic research projects. Potential applicants are encouraged to explore possible collaborations with genomics or other researchers conducting such tudies.  Potential applicants are also encouraged to explore other relevant funding opportunities developed by NHGRI and by other NIH Institutes and Centers (ICs).

The following research areas of interest have been identified by the participating ICs.

The NHGRI is interested in research that addresses:

• the ethical, legal, and social issues that arise from genomic research and genomic health care across a broad spectrum of diseases and conditions,

• the broader implications of the expansion of genomic research and genomic health care and of the use of genomic information in non-medical settings.

This includes basic normative and conceptual research and the generation of data and development of tools that can be applied across many different diseases and conditions.  Projects focused on a single disease or disorder may be of lower priority for NHGRI unless generalizability is clearly shown.  Examples of topics of specific interest to NHGRI are available on the website referenced above.

The National Institute on Aging (NIA) is interested in research that focuses on the ethical, legal and social issues related to aging and genomics.  Examples of topics of particular interest include: research on the anticipated and actual impact of genetic and genomic information; studies on ethical, regulatory and policy challenges in aging research (such as clinical trials, population-based studies) incorporating genetic and genomic technologies; issues raised by the collection, storage and use of biological samples and associated data; studies that incorporate and investigate the perspectives of diverse communities; and studies on models of participant and community engagement or participatory research in aging research. The ultimate goal of this research will be to understand how people make sense of and act upon genetic and genomic information related to aging and diseases of aging; to inform the ethical conduct of aging research involving genetic and genomic information and data; and overall to improve outcomes related to aging and diseases of aging.

1.Clinical, behavioral, and social datasets have large amounts of individual level data.  When combined with biomarker and genetic data, risk assessment is needed to determine the chance of re-identification.

2.With respect to sharing summary statistics, there is uncertainty and inconsistency across the research community as to whether summary statistics from genetic studies can be shared publicly, or whether they should be considered as ‘restricted access’ data along with individual level information. The determination that summary statistics belong in the category of restricted access individual level data outcomes is costly because of the extra protective measures and personnel needed to ensure compliance. Approaches to risk assessment include but are not limited to determination of the ability to reidentify study participants, and delineation of potential risks and established benefits that should be considered to define principles of summary data sharing. In certain cases, large amounts of data may need to be redacted from a dataset to render summary data sharable; for example, redaction of data where use by commercial entities is prohibited may mean recalculation of entire findings from datasets, which may skew results. In assessing the question of open versus restricted access for meta-analysis summary statistics considerations are of the likelihood that any individual harm or contravention of informed consent could occur if such data are open versus what damage is done by slowing or preventing access to these data should access be restricted.

3. Risk assessment is needed for how changes in the science of a particular disease would impact the disease community with respect to informed consent. An example is the shift from the term “autism” to include the term “autism spectrum”; or the term “Alzheimer’s disease” to include “Alzheimer’s disease related dementias” when the science motivates this shift. Assessment is needed to determine how such a change can most easily be appreciated by the study population and research community at large, and how this impacts subject understanding of informed consent and the ability to share data.  Evaluation of how to best inform subjects of their genetic data in the context of imaging and/or cognitive assessment outcomes is also needed.

The NIEHS is interested in addressing social, ethical, and legal concerns of the public in research endeavors related to gene-environment interactions, environmental health hazards, genetic susceptibility to environmental exposures and ELSI issues related to research involving children, aged populations, tribal communities and other vulnerable populations impacted by specific environmental exposures. In particular, NIEHS has an interest in supporting collaborations between scientists and the public for the development of culturally appropriate translations of the scientific findings of research on complex, environmentally-relevant diseases, as well as assessment of the comprehensibility and effectiveness of educational interventions used (i.e., whether they raise environmental health literacy). NIEHS is additionally interested in research on the bioethical issues related to ownership of biosamples collected in environmental health studies, data sharing requirements when it involves data derived from tribal-based environmental health studies, or stigma associated with identification of genetic conditions that put individuals at greater risk from environmental exposures.

Jul 24

LIVE STREAMING Event ~ July 27-28: The Right to Science


The Right to Science

27 – 28 July 2017

AAAS Headquarters

1200 New York Ave NW
Washington, DC

We welcome you to the upcoming meeting of the AAAS Science and Human Rights Coalition focused on the right to enjoy the benefits of scientific progress and its applications, Article 15 of the International Covenant on Economic, Social and Cultural Rights.

Dr. Mikel Mancisidor, Member of the UN Committee on Economic, Social and Cultural Rights, will discuss how recent research completed by AAAS, the Coalition, and others is informing international efforts to better define the right to science as a vital step towards its robust implementation.

Other sessions will explore how the right to science is being used to frame scientific research and how the framework and principles underlying the right can be used to influence policy, funding and programmatic decision-making. Panelists and participants will also consider the challenging “sticky questions” that the right to science raises. Confirmed speakers include Andrea Boggio (Bryant University), Patricia Carbajales (Clemson University), Mike Frick (Treatment Action Group), Bartha Knoppers (McGill University), Stephen Marks, (Harvard University), Margaret Weigers Vitullo (American Sociological Association), and Jessica Wyndham (AAAS).

Please visit the event page for the full agenda and registration details. A live stream of the sessions on July 27 will be available at that website.

Coalition meetings convene scientists, engineers, and health professionals with human rights leaders and policy makers to discuss emerging issues at the nexus of science, technology, and human rights. The Coalition serves as a catalyst for the increased involvement of scientific, engineering, and health associations and their members in human rights-related activities. To learn more about how you can become involved in the AAAS Science and Human Rights Coalition, click here.

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