Postmortem Genetic Testing Study

Study: Assessing the Perception and Experience of Postmortem Genetic Testing Among Surviving Family Members.

Objectives

The purpose of this study is to better understand the postmortem genetic testing experience among surviving family members.

The aim of this study is to learn about:

(1) the logistical process of obtaining genetic testing in a postmortem setting and

(2) the psychological experience of undergoing this process.

Data from this research will contribute to the genetic counseling profession by improving the postmortem genetic testing experience among surviving family members.

Eligibility:

(1) Be 18 years old or older
AND
(2) Be the next of kin* of a family member who was 18 years old or younger when they experienced sudden unexpected death
*Next of kin is defined as a person’s closest living relative or relatives
AND
(3) Your deceased family member did NOT die from homicide, suicide, or accident
AND
(4) Your family member received postmortem genetic testing

The survey takes approximately 20-40 minutes to complete, please click below to access the survey.

If you have any questions or would like additional information about this study, please contact Kamdyn Finney at [email protected] or the faculty investigator, Monika Zak Goelz MS, MS, CGC at [email protected]. This study has been approved by the Long Island University Institutional Review Board who can be contacted at [email protected] for any inquiries.

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