To: Journalists, Editors, Producers, Assignment DesksFrom: Leah Ramsay, Berman Institute Media Relations, 202.642.9640

MEDIA MEMO: BIOETHICS IN 2014

Below is a selection of some of the most pressing, challenging ethical issues in science and medicine, and the bioethics experts that will be tackling them in 2014.To arrange an interview or for more information on any of these topics, please contact Leah Ramsay at 202.642.9640 or [email protected].

From questions of how to ethically feed the growing global population, to long-duration space flight, to the implications of genomic medicine, the faculty of the Johns Hopkins Berman Institute of Bioethics are global thought leaders, addressing the difficult issues on which progress in science, health and ethics depend.

Topics described below:• Global Food Ethics• Ethical Considerations of Long-Duration Space Flight• GUIDE: Genomic Uses in Infectious Disease & Epidemics • Advancing the Science of AIDS & Pregnancy• Protecting Health and Human Rights in Conflict Zones (Expert)• Rethinking the Ethics of American Healthcare and Medical Research

In addition to these selected topics, please contact the Berman Institute for ethical commentary on your science and health stories in 2014: Leah Ramsay, Media Relations Officer, [email protected], 202.642.9640._________________________________________________________

Global Food Ethics Fair access to good food is a challenge as old as civilization. As the global populace climbs toward an expected 9.5 billion by 2050, comprehensive ethical guidelines are needed to accomplish the task in our day.

“There is something profoundly wrong about a world in which nearly two billion people are undernourished while another two billion people are overweight,” says Ruth Faden, Director of the Berman Institute and a co-principal investigator on the project.

In October 2014, the project will convene a working group of diverse international experts, who at times find their interests at odds, to discuss the barriers to – and common ground for – feeding the world ethically. This working group will include representatives from low, middle and high income countries in fields including nutrition, food security, economics, sustainable agriculture, animal welfare, plant genetics, agribusiness, water management and climate change. More information: http://www.bioethicsinstitute.org/globalfoodethics

Ethical Considerations of Long-Duration Space FlightIn March 2014 the Institute of Medicine committee on “Ethics Principles and Guidelines for Health Standards for Long Duration and Exploration Spaceflights” will release its consensus study, requested by NASA. Jeffrey Kahn, the Berman Institute’s Deputy Director and the Levi Professor of Bioethics and Public Policy, is chair of the committee.

From the committee webpage: “NASA is in the process of planning for exploration class missions of long duration and beyond low Earth orbit (LEO)… NASA is looking, in particular, for a framework of ethical and policy principles that can help guide decision-making associated with implementing health standards for exploration class space missions when existing standards cannot be fully met, or the level of knowledge of a given condition is sufficiently limited that an adequate standard cannot be developed, for the mission.”

GUIDE: Genomic Uses in Infectious Disease & Epidemics Pandemic scares in recent years, from SARS to influenza to MERS, underscore the need for more work on the largely unexplored but crucial ethical terrain of genomics as applied to infectious disease. The Berman Institute will bring together a multidisciplinary team of experts to explore public health genomics in two case studies: pandemic influenza and Hepatitis C.

“It is important to begin to map out and address the ethical, legal and social implications of utilizing genomic information for major public health areas like infectious disease, as the science in this area is moving quickly,” says Jeffrey Kahn, a co-principal investigator on GUIDE and Deputy Director of the Berman Institute.More information: http://www.bioethicsinstitute.org/media/personal-genome-public-health

Advancing the Science of AIDS & PregnancyEthical, legal and safety concerns have led to the widespread exclusion of pregnant women from medical research, leaving women, families and physicians have no ethical or legal guidance specific to pregnancy to help them with tough medical decision-making. A team of women scholars is setting out to change this.

“Pregnant women become sick just like everyone else, and women with chronic illnesses become pregnant; it is just unacceptable to say to them and their physicians that, because research in pregnancy is too complicated to do, unlike for other patients, decisions about your care have be made without answers or guidance from science,” says Ruth Faden, Director of the Berman Institute and co-principal investigator on the project.

Faden is one of four women scholars will lead the project and collaborate with the Centers for AIDS Research (CFAR) at Johns Hopkins and the University of North Carolina. They will focus specifically on women of reproductive age who have or are at risk of contracting HIV, which amounts to a population of over 16 million people worldwide.

Rethinking the Ethics of American Healthcare and Medical Research Bioethicists at the Berman Institute have led a team in developing a groundbreaking new approach to the ethics of medical research practice and policy, rejecting the sharp distinction between research and practice that has guided policy since the infamous human-subjects research scandals of the 1970’s.

Included in their proposal is an obligation on patients to participate in continual learning from medical care, so that future care will be improved.

Now, Drs. Ruth Faden and Nancy Kass are looking at the practicality of their proposed ethical framework, holding “deliberative democracy” sessions with patients in various healthcare systems to get their opinions on options for being asked, and giving, their informed consent to participate in research or, as it is called in the new framework, “learning activities”. These sessions have begun in 2013, and the results will be published in 2014.“We’re finding that patients are both underprotected from risks in medical treatment and over-protected from low-risk quality-improvement research, bringing progress to a dangerous stalemate that is costing lives,” Faden, Kass and their co-authors wrote in laying out their ethics framework. Among many related speaking engagements, Kass discussed the issues on the public radio program Maryland Morning with Sheilah Kast.

Protecting Health and Human Rights in Conflict Zones (Expert)Berman Institute faculty member Leonard Rubenstein is a globally recognized leader in advocacy for the protection of healthcare workers in conflict zones, as well as an outspoken critic of detainee torture. In 2013 he spoke out against attacks on healthcare workers in Syria and other conflict zones (see video interview here).In 2014, Rubenstein anticipates the World Health Organization and United Nations will issue responses to his work on the treatment of detainees, as well as new research on the ethical conflicts faced by healthcare workers that deal with prisoners held in solitary confinement.

“Engaging in armed conflict does not mean leaving our morality and respect for civilian lives behind,” says Rubenstein. In 2013 he was the principal organizer and co-author of the task force report Ethics Abandoned: Medical Professionalism and Detainee Abuse in the War on Terror, which charged that U.S. military and intelligence agencies directed health professionals to violate standard ethical principles of their profession. ________________________________________________________Johns Hopkins Berman Institute of BioethicsMedia Contact: Leah Ramsay202.642.9640 [email protected]