Evidence map›Paper›PMID 35216680›Full record

ArticleAmerican journal of human genetics2022

Family secrets: Experiences and outcomes of participating in direct-to-consumer genetic relative-finder services.

Christi J Guerrini, Jill O Robinson, Cinnamon C Bloss, Whitney Bash Brooks, Stephanie M Fullerton, Brianne Kirkpatrick, Sandra Soo-Jin Lee, Mary Majumder, Stacey Pereira, Olivia Schuman and 1 more

Open access · bronzeAbstract read
In one paragraph

Article in American journal of human genetics, 2022. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 13 papers, 1 of them a synthesis that pooled it.

0numbers the graph read from it
0cells of the map it votes in
13citing papers in PubMed, 1 pooled it
5.2field-weighted citation impact, top 4% of its field
1 · What the graph read from it

What it found

Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.

The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.

2 · The registry

The trial behind it

Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.

Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.

3 · Its place in the literature

Who cites it

13 citing papers in PubMed, 1 synthesis or guideline pooled it, 28 citations in OpenAlex.

  1. Pooled it
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4 · The record

Corrections and comments

PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.

5 · Who and what money

Authors and funding

11 authors at 5 institutions in 2 countries.

Christi J GuerriniCenter for Medical Ethics and Health Policy, Baylor College of Medicine, 1 Baylor Plaza, Houston, TX 77030, USA. Electronic address: guerrini@bcm.edu.
Jill O RobinsonCenter for Medical Ethics and Health Policy, Baylor College of Medicine, 1 Baylor Plaza, Houston, TX 77030, USA.
Cinnamon C BlossUniversity of California San Diego, La Jolla, CA, 92093, USA.
Whitney Bash BrooksCenter for Medical Ethics and Health Policy, Baylor College of Medicine, 1 Baylor Plaza, Houston, TX 77030, USA.
Stephanie M FullertonDepartment of Bioethics and Humanities, University of Washington School of Medicine, 1959 NE Pacific St, Seattle, WA 98195, USA.
Brianne KirkpatrickWatershed DNA, PO Box 126, Crozet, VA 22932, USA.
Sandra Soo-Jin LeeDivision of Ethics, Department of Medical Humanities and Ethics, Columbia University, 630 West 168(th) Street, PH 1525, New York, NY 10032, USA.
Mary MajumderCenter for Medical Ethics and Health Policy, Baylor College of Medicine, 1 Baylor Plaza, Houston, TX 77030, USA.
Stacey PereiraCenter for Medical Ethics and Health Policy, Baylor College of Medicine, 1 Baylor Plaza, Houston, TX 77030, USA.
Olivia SchumanCenter for Medical Ethics and Health Policy, Baylor College of Medicine, 1 Baylor Plaza, Houston, TX 77030, USA.
Amy L McGuireCenter for Medical Ethics and Health Policy, Baylor College of Medicine, 1 Baylor Plaza, Houston, TX 77030, USA.
Baylor College of Medicine · USCal Humanities · USUniversity of California San Diego · USUniversity of Washington · USWatershed Center · US

Funding

IGG on the Internet: Characterizing Public Perspectives on Law Enforcement Use of Genetic Genealogy Data in Social MediaR01HG011268 · NHGRI · BAYLOR COLLEGE OF MEDICINE · PI GUERRINI, CHRISTI, MCGUIRE, AMY L · 2020 to 2023
$2.4M
NHGRI NIH HHS R01 HG011268
6 · The paper itself

Abstract

In recent decades, genetic genealogy has become popular as a result of direct-to-consumer (DTC) genetic testing. Some DTC genetic testing companies offer genetic relative-finder (GRF) services that compare the DNA of consenting participants to identify genetic relatives among them and provide each participant a list of their relative matches. We surveyed a convenience sample of GRF service participants to understand the prevalence of discoveries and associated experiences. Almost half (46%) of the 23,196 respondents had participated in GRF services only for non-specific reasons that included interest in building family trees and general curiosity. However, most (82%) also learned the identity of at least one genetic relative. Separately, most respondents (61%) reported learning something new about themselves or their relatives, including potentially disruptive information such as that a person they believed to be their biological parent is in fact not or that they have a sibling they had not known about. Respondents generally reported that discovering this new information had a neutral or positive impact on their lives, and most had low regret regarding their decision to participate in GRF services. Yet some reported making life changes as a result of their discoveries. Compared to respondents making other types of discoveries, those who learned that they were donor conceived reported the highest decisional regret and represented the largest proportion reporting net-negative consequences for themselves. Our findings indicate that discoveries from GRF services may be common and that the consequences for individuals, while generally positive, can be far-reaching and complex.

Indexed as

Direct-To-Consumer Screening and TestingGenetic TestingExploratory BehaviorHumansPedigreeSurveys and Questionnairesadoptionancestrydirect-to-consumer genetic testingdonor conceptionfamily secretsmisattributed parentagenon-paternity eventrelative matching

Identifiers

PMID35216680
PMCPMC8948156
OpenAlexW4214504032

What Socratic holds

Textmetadata
Read underepoch 390

Registered trials

None linked

Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the Socratic graph.