Tuesday, 17 September 2013

International structures needed for equitable access to DNA identification after disaster

When the remains of victims of political conflict or natural disasters are so badly damaged that they cannot be identified visually, DNA can often help. With modern genetics technologies, a small bit of tissue may be all that’s needed to determine who’s who. Unfortunately, in many areas of the world facing violent times, such as the current war zone that is Syria, the government and its citizens may not be able to afford such forensic technologies.

According to medical ethicist Alex John London of Carnegie Mellon University’s Center for Ethics and Policy, Lisa Parker of the Center for Bioethics and Health Law at the University of Pittsburgh, and Jay Aronson of Carnegie Mellon’s Center for Human Rights Science, this inequality in access to DNA science should stop. “In the context of poverty and deprivation, forensic identification might appear to be a luxury,” the trio wrote in a policy forum in Science last week (September 13). “But access to scientific identification of the missing and the dead after mass casualty events can be a starting point for healing, reconstruction, and the ability to access financial resources or to regain or maintain social status.”

"After a conflict or a disaster, if remains are burned, mangled, decayed or comingled, the only way to identify them may be by using DNA, said lead author Alex John London. "In low- and middle-income settings, such technology may not be available, or not available in sufficient capacity to handle the surge in demand associated with a mass casualty event. Not being able to identify a missing loved one can have emotional, social, and economic implications that can be most dire for those who are already the most vulnerable."

Such large-scale efforts are becoming more and more common; one such project continues in Libya, for example, wherein researchers are attempting to identify the bodies that once filled mass graves following the violent reign of Muammar Gaddafi. But funding is not always easy to come by, and equalizing access to such expensive and complicated technology is no simple task. Indeed, DNA identification takes more than just a tissue sample. It also requires a database of familial samples and sizable computer hardware to process all the data—not to mention the DNA sequencing equipment itself.

The April 2013 collapse of the Rana Plaza Factory Building in Bangladesh, in which more than 1,130 people were killed, is only the latest in a long line of events that has made plain the plight of the families whose loved ones go missing after conflict and disaster.

According to media reports, hundreds of Rana Plaza victims' families still have not received the bodies of their loved ones or the death benefits that accrue for survivors because the government has not been able to formally identify all of the victims. This situation, which has led to demonstrations against the government by families and allegations of corruption and malfeasance, has arisen, in part, because the main forensic laboratory in the country does not have enough capacity to handle so many cases at once.

“Our concern was that there should be a mechanism in place that would allow access to DNA identification beyond just ability to pay,” London told NPR’s All Things Considered. “Too often if there isn’t a funder out there, then people who are missing relatives won’t get access to the technology.”

"Humanitarian organizations and governments increasingly recognize the importance of timely identification of remains and, ideally, their return to families for proper burial. Unfortunately, though, access to the resources and technologies to perform these acts is significantly restricted by the willingness and ability of governmental and non-governmental organizations to pay for them," said co-author Jay Aronson, associate professor of science, technology, and society at CMU and director of the university's Center for Human Rights Science. "This means that some victims of conflict and disaster have been identified (e.g., in Bosnia or in the aftermath of the 9/11 World Trade Center attacks), while others have not (e.g., in Rwanda or Haiti). The 2004 Indian Ocean Tsunami illustrates the inequities: international efforts to identify the remains of victims were undertaken in Thailand, where there was a high density of Western tourists, but not in Sri Lanka, Indonesia, or other affected areas."

The authors advocate creating international structures, which could take many forms ranging from a single international institution to a decentralized network of agencies, to promote more equitable access to forensic identification. They outline four main reasons that international structures are needed. First, such structures would address humanitarian and human rights goals by granting access to forensic identification technology on terms other than the ability to pay. Second, the structures would quickly and efficiently implement standardized procedures and have capacity to cope with a sharp increase in demand.

Third, international structures are needed to prevent material and information gathered from being used for any purpose not directly related to identifying the missing. Expanding access to forensic identification will not advance humanitarian and social goals unless the participants are confident that those carrying out the identification process have the mandate and the authority to protect their rights and welfare.

And finally, to ensure that forensic identification advances human rights goals, international structures must have explicit mechanisms to facilitate using identification information as evidence in legal proceedings against those who are responsible for the death or disappearance of the missing - while ensuring that the privacy of donors is not compromised.

The recommendation to formalize international structures in order to improve DNA identification following conflicts and disasters is one result of the $1.2 million National Institutes of Health (NIH) grant awarded to Aronson to analyze ethical and policy problems associated with the identification process.

Tuesday 17 September 2013




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