Consent process for US-based family reference DNA samples

Katsanis, Sara Huston; Snyder, Lindsey; Arnholt, Kelly; Mundorff, Amy Z.

doi:10.1016/j.fsigen.2017.10.011

Cited by 10 publications

(9 citation statements)

References 12 publications

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“…The Australian Law Reform Commission's (2010) “ Essentially yours: The protection of human genetic information in Australia” ( 37 ) report provides procedural, legal and privacy regulations regarding the collection and use of DNA samples that are voluntarily provided by kin. The only gray literature that links emotional support with the procedural awareness as to how DNA and forensic collection may impact families is in the AFP guide “ The SOS Guide: A guide for the families of missing people” ; with a section identifying emotional impacts.…”

Section: Discussionmentioning

confidence: 99%

Dreading Yet Hoping: Traumatic Loss Impacted by Reference DNA Sample Collection for Families of Missing People

Wayland

Ward

2022

Front. Psychiatry

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The trauma of having a family member missing is commonly described as an ambiguous loss where the finality of the loss is not realized, as is experienced with a death. There is uncertainty due to the trauma of the absence and subsequent police investigation, leading to physical and emotional impacts for the aftercare of those left behind. There are 850 unidentified human remains and 2,600 long-term missing persons cases in Australia. The Australian Federal Police (AFP) National DNA Program for Unidentified and Missing Persons aims to scientifically link these cases using modern DNA techniques and databases. A DNA-led identification effort may assist to provide answers to Australian families searching for missing relatives, but may also contribute to the trauma experienced by these families. A literature review demonstrated empirical research for the development of scientific best practices for the collection of reference DNA samples for forensic purposes, but minimal evidence about the impact of reference DNA sample collection on kin when attempting to identify the deceased remains of missing people in non-mass casualty situations. The aim of this study was to develop an academically robust understanding of the unique impact of reference DNA sample collection on families of missing persons and support pathways tailored to the experience. This study involved 26 Australian families of long-term missing (ranging from 1 to 20+ years) people in Australia anonymously completing a mixed-methods online survey about their experiences of providing reference DNA samples to aid missing persons investigations. Respondents were representative of a range of ages, genders and relationships to the missing individual. The thematic analysis of the survey results identified the provision of a reference DNA sample: (1) resembles an overt act of hope as families perceive their sample assists the investigation, whilst also being traumatic, triggered by the prospect of scientifically matching their missing family member to a set of unknown human remains; (2) can cause immediate interpersonal impacts and ongoing impacts to families' wellbeing; and (3) can be improved by considering the environment where the sample is collected, professionalism of the police officer collecting the sample, timeliness of the provision of the sample, level of support provided during and after sample collection, and effective communication of forensic procedures and processes as they relate to the missing persons investigation. The study concludes that the complexity associated with provision of family reference samples requires the development and implementation of best practice guidelines, including psycho-education strategies to be used by practitioners to minimize the vicarious trauma for relatives already traumatized by the loss of their missing family member. These guidelines would support the objectives of the AFP Program and benefit all routine missing persons investigations.

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Section: Discussionmentioning

confidence: 99%

Dreading Yet Hoping: Traumatic Loss Impacted by Reference DNA Sample Collection for Families of Missing People

Wayland

Ward

2022

Front. Psychiatry

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“…On the other hand, IGG might be a solution in the worldwide crisis in the identification of migrants who die crossing borders. The challenges of identifying deceased migrants in the United States go beyond technical and logistical ones to cultural, political, and xenophobic ones (60,110). Missing-persons investigations typically involve kinship associations to close biological relatives, which is a reliable approach for the vast majority of nuclear families.…”

Section: Terms Of Service As a Form Of Consentmentioning

confidence: 99%

“…Missing-persons investigations typically involve kinship associations to close biological relatives, which is a reliable approach for the vast majority of nuclear families. However, in cases of missing migrants, close family members might not be able or willing to provide genetic specimens to law enforcement for a federal database (60). The 2020 expansion of CODIS collection of DNA from immigrant detainees might enable identifications, since a majority of immigrant detainees are from Latin America (117).…”

Section: Terms Of Service As a Form Of Consentmentioning

confidence: 99%

Pedigrees and Perpetrators: Uses of DNA and Genealogy in Forensic Investigations

Katsanis

2020

Annu. Rev. Genom. Hum. Genet.

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In the past few years, cases with DNA evidence that could not be solved with direct matches in DNA databases have benefited from comparing single-nucleotide polymorphism data with private and public genomic databases. Using a combination of genome comparisons and traditional genealogical research, investigators can triangulate distant relatives to the contributor of DNA data from a crime scene, ultimately identifying perpetrators of violent crimes. This approach has also been successful in identifying unknown deceased persons and perpetrators of lesser crimes. Such advances are bringing into focus ethical questions on how much access to DNA databases should be granted to law enforcement and how best to empower public genome contributors with control over their data. The necessary policies will take time to develop but can be informed by reflection on the familial searching policies developed for searches of the federal DNA database and considerations of the anonymity and privacy interests of civilians. Expected final online publication date for the Annual Review of Genomics and Human Genetics, Volume 21 is August 31, 2020. Please see http://www.annualreviews.org/page/journal/pubdates for revised estimates.

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“…There are examples of consent forms, frequently asked questions (FAQs) and information on processes, and/or recommended policies from a number of sources such as International Committee of the Red Cross (ICRC) [ 29 ], Interpol’s I-Familia [ 30 , 31 ], Armed Forces DNA Identification Laboratory [ 32 , 33 ], Budowle et al [ 34 ], Australian Federal Police-National DNA Program for Unidentified and Missing Persons [ 35 ], and FBI’s Missing Persons Program [ 36 ] to name a few. Various aspects of informed consent for missing person identification have been summarized well by Katsanis et al [ 37 ]. The information in these and other documents form a good basis to follow and need not be repeated herein.…”

Section: Introductionmentioning

confidence: 99%

“…However, depending on the document(s), risk disclosure may be minimal or not stated, likely because the chance and/or severity of risk to an individual(s) were considered nominal at best. Additionally, as Katsanis et al [ 37 ] point out “Unlike biomedical research requirements, the description of risks to the participant is not required by law.”…”

Section: Introductionmentioning

confidence: 99%

Revisiting informed consent in forensic genomics in light of current technologies and the times

Budowle

Sajantila

2023

Int J Legal Med

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Informed consent is based on basic ethical principles that should be considered when conducting biomedical and behavioral research involving human subjects. These principles—respect, beneficence, and justice—form the foundations of informed consent which in itself is grounded on three fundamental elements: information, comprehension, and voluntary participation. While informed consent has focused on human subjects and research, the practice has been adopted willingly in the forensic science arena primarily to acquire reference samples from family members to assist in identifying missing persons. With advances in molecular biology technologies, data mining, and access to metadata, it is important to assess whether the past informed consent process and in particular associated risks are concomitant with these increased capabilities. Given the state-of-the-art, areas in which informed consent may need to be modified and augmented are as follows: reference samples from family members in missing persons or unidentified human remains cases; targeted analysis of an individual(s) during forensic genetic genealogy cases to reduce an investigative burden; donors who provide their samples for validation studies (to include population studies and entry into databases that would be applied to forensic statistical calculations) to support implementation of procedures and operations of the forensic laboratory; family members that may contribute samples or obtain genetic information from a molecular autopsy; and use of medical and other acquired samples that could be informative for identification purposes. The informed consent process should cover (1) purpose for collection of samples; (2) process to analyze the samples (to include type of data); (3) benefits (to donor, target, family, community, etc. as applicable); (4) risks (to donor, target, family, community, etc. as applicable); (5) access to data/reports by the donor; (6) sample disposition; (7) removal of data process (i.e., expungement); (8) process to ask questions/assessment of comprehension; (9) follow-up processes; and (10) voluntary, signed, and dated consent. Issues surrounding these topics are discussed with an emphasis on addressing risk factors. Addressing informed consent will allow human subjects to make decisions voluntarily and with autonomy as well as secure the use of samples for intended use.

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Consent process for US-based family reference DNA samples

Cited by 10 publications

References 12 publications

Dreading Yet Hoping: Traumatic Loss Impacted by Reference DNA Sample Collection for Families of Missing People

Dreading Yet Hoping: Traumatic Loss Impacted by Reference DNA Sample Collection for Families of Missing People

Pedigrees and Perpetrators: Uses of DNA and Genealogy in Forensic Investigations

Revisiting informed consent in forensic genomics in light of current technologies and the times

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