Family-Laboratory Communications

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:

• A log of contacts for each family, including who provided a reference or kinship sample and the date thereof.
• The victim’s information (e.g., the data collected in the Victim Identification Program (VIP)).
• Chain-of-custody information for reference samples, including the type of sample, when it was received, who donated it, etc.
• The status of each reference sample submitted by the family, including whether its analysis yielded a useful DNA profile or when it is scheduled to be analyzed.
• Whether the amount of reference material is sufficient to make an identification.

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.

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:

• Some people hold negative perceptions of civil servants, leading them to believe, for example, that the laboratory is not working hard enough or does not have the expertise to perform the work.
• Obtaining reference samples from a family member who was estranged from a victim can be difficult.
• DNA analysis may uncover situations in which biological relationships are not as reported. In such cases, the laboratory must have a policy. It may be advisable to consult with a bioethicist (see http://www.bioethics.net).
• If the mass fatality resulted from criminal or terrorist activity, family members may resist a mass burial that includes the remains of the perpetrator(s); they may not want any unidentified remains of their loved one commingled with the remains of the person or people who killed them.
• One of the most painful experiences for the family of a victim is learning that a misidentification requires exhumation. It also can be difficult for a family to receive additional remains after they have buried a loved one. A laboratory director should be prepared to encounter a wide range of wishes from the victims’ families if such situations occur.

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