ArticleJournal of genetic counseling2012
A family experience of personal genomics.
Article in Journal of genetic counseling, 2012. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 15 papers, 1 of them a synthesis that pooled it.
What it found
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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.
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.
Who cites it
15 citing papers in PubMed, 1 synthesis or guideline pooled it.
- Internet-Based Direct-to-Consumer Genetic Testing: A Systematic Review.Journal of medical Internet research · 2015Pooled it
- Bridging genomics' greatest challenge: The diversity gap.Cell genomics · 2025Review
- Generalisation of genomic findings and applications of polygenic risk scores.BMC medical genomics · 2023Article
- Implementation of individualised polygenic risk score analysis: a test case of a family of four.BMC medical genomics · 2022Article
- Whole Genome Interpretation for a Family of Five.Frontiers in genetics · 2021Article
- German and Italian Users of Web-Accessed Genetic Data: Attitudes on Personal Utility and Personal Sharing Preferences. Results of a Comparative Survey (n=192).Frontiers in genetics · 2020Article
- "I would rather have it done by a doctor"-laypeople's perceptions of direct-to-consumer genetic testing (DTC GT) and its ethical implications.Medicine, health care, and philosophy · 2019Article
- Ancestry Testing and the Practice of Genetic Counseling.Journal of genetic counseling · 2017Review
- 23andMe: a new two-sided data-banking market model.BMC medical ethics · 2016Article
- Genomic counseling: next generation counseling.Journal of genetic counseling · 2014Article
- Autobiologies on YouTube: Narratives of Direct-to-Consumer Genetic Testing.New genetics and society · 2014Article
- Direct-to-Consumer Genetic Testing and Personal Genomics Services: A Review of Recent Empirical Studies.Current genetic medicine reports · 2013Article
- Crowdsourcing the corpasome.Source code for biology and medicine · 2013Article
- Article
- Communication about DTC testing: commentary on a 'family experience of personal genomics'.Journal of genetic counseling · 2012Article
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
1 author.
Funding
No grant is acknowledged in the PubMed record.
Abstract
This article presents a personal journey of a close-knit family from Málaga, Spain who engaged with direct-to-consumer (DTC) genomic testing. Whilst the testing was initiated by one member of the family who works as a genome bioinformatician, none of the remaining family had any prior experience with DTC genetic testing. A thoughtful account, written in the first person, is offered on the experience of genome testing across the various members of the family together with a reflection on how it felt to be a custodian of the 'family genome'. The way the family processed their genome information is explored and the difficulties and challenges that resulted are discussed. Whilst there is a wealth of literature that describes how families communicate information surrounding single genes, there is very little which explores the experience of communication about whole, shared genomes. The experiences described in this paper provide an insight into this new territory.
Indexed as
Identifiers
22223063What OpenQuestion holds
Registered trials
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 OpenQuestion graph.