The family brochure made it possible for the families of 9/11 victims to receive reliable information about the DNA testing process, including what they could expect and the meaning of results. The document also has been used to help families of missing persons, including after Hurricane Katrina.
If directed to do so by the ME, the laboratory director may have to keep family members apprised of the identification effort, including any challenges that might hinder making identifications. The relationship between the victims’ families and the laboratory is a delicate one, and the laboratory should be prepared to clarify any incomplete or incorrect information and to do everything possible to educate the families.
One way to educate the victims’ families—and the public, in general—is to provide basic information on how DNA is used in mass fatality incidents. In an effort to educate families of the WTC victims, for example, the National Human Genome Research Institute at the National Institutes of Health and the National Institute of Justice at the U.S. Department of Justice created a brochure that describes the DNA identification process, including why reference samples are collected and how they are used. See Identifying Victims Using DNA: A Guide for Families, available in English and Spanish.
The WTC response also had a toll-free “family hotline” to supplement the work of the family assistance center. The hotline was staffed primarily by medical and legal investigators who were fluent in English and Spanish. DNA laboratory personnel also were brought in to offer advice on kinship samples and pedigrees. The hotline became the primary way that family members were able to find out if their samples produced usable DNA profiles and, if necessary, to schedule an appointment to bring in additional reference samples.
The families of WTC victims relied on the hotline to ensure they had done everything they could to help their loved one be identified. If a hotline is established, it would be important to have appropriate multilingual responders. DNA personnel should also be available to provide guidance on questions such as whether it would be helpful for a certain family member to provide a kinship sample.
Individuals staffing the hotline should have online access to:
It may be useful to assign particular individuals to work with particular families. Limiting the number of people with whom a victim’s family has to deal may facilitate communication, build trust, reduce stress on the family, and limit unrealistic expectations. Of course, the feasibility of this approach will depend on the size of the mass fatality incident and whether staff is available to support a hotline.
For the families of missing persons, including the victims of the 9/11 terrorist attacks, there is no such thing as ‘closure’ or ‘moving on.’ Families first must do the hard work of grieving to get to a place where they intellectually accept that their loved one is gone; then they can learn how to forever hold them in their hearts. For many, the identification of remains helps them to get through the first part of this process so that they can do the harder work of the second part.
Depending on the duration of the response, families may form their own groups. The laboratory or a designee may be asked to participate in family group meetings. This is an opportunity to provide information and dispel rumors or misconceptions about the DNA testing processes and results. For example, phrases used by a DNA professional may be incorrectly interpreted by a layperson. The term “intact body” is likely to mean one thing to a professional and another to a victim’s loved one. The laboratory director also should be aware that several groups representing the families may exist and should not assume that all family members receive information that is imparted at these meetings.
Sometimes, it may be helpful for family members to tour the laboratory and ME facilities to more fully understand the identification processes. With respect to DNA analysis, for example, family members are likely to inquire about the status of samples they provided, whether those samples provided usable DNA profiles, and whether they can do anything else to assist the effort. The laboratory should be prepared to answer these questions.
Finally, here are some additional lessons learned during the 9/11 DNA identification effort: