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What Has the Sudden Unexpected Infant Death and Sudden Death in the Young Case Registry Learned About Consenting

Heather MacLeod1, Erik Buczkowski2, Meghan Faulkner2

  • 1From the Data Coordinating Center for the SUID and SDY Case Registry.

The American Journal of Forensic Medicine and Pathology
|October 3, 2024
PubMed

Insights

Obtaining family consent for biospecimen research in sudden unexpected infant death (SUID) and sudden death in the young (SDY) cases is challenging. Higher consent rates were achieved when Medical Examiner Office staff contacted families early after death.

Area of Science:

  • Forensic Pathology
  • Genetics
  • Public Health

Background:

  • The Sudden Unexpected Infant Death (SUID) and Sudden Death in the Young (SDY) Case Registry collects data on sudden, unexpected deaths in individuals aged 0–20 years.
  • Families can provide informed consent for biospecimen banking and genomic research.

Purpose of the Study:

  • To analyze the frequency, timing, methods, and success rates of obtaining consent for biospecimen research in SUID/SDY cases.
  • To identify factors influencing consent acquisition and barriers encountered.

Main Methods:

  • Review of consent-eligible SUID/SDY cases from January 2015 to January 2022.
  • Analysis of consent data including time from death, consent type (paper, phone, electronic), and personnel involved (ME Office staff vs. external genetic counselors).

Main Results:

  • Out of 5438 cases, 3498 (64%) were eligible, and 391 (11%) were consented.
  • Consent was obtained within 60 days for 54% of cases, with 39% secured within 48 hours.
  • Consent rates varied significantly by site (3%–66%), with higher success when initiated by Medical Examiner Office personnel, particularly social workers or death investigators, shortly after death.

Conclusions:

  • Consent acquisition for biospecimen research in SUID/SDY cases faces significant challenges, including contact and response issues.
  • Early engagement by Medical Examiner Office-based staff during bereavement outreach appears crucial for improving consent rates.

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