ArticleJournal of participatory medicine2018
Participant-Partners in Genetic Research: An Exome Study with Families of Children with Unexplained Medical Conditions.
Article in Journal of participatory medicine, 2018. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 2 papers.
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.
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
2 citing papers in PubMed.
- A Genocentric Approach to Discovery of Mendelian Disorders.American journal of human genetics · 2019Article
- The Role of Participants in a Medical Information Commons.The Journal of law, medicine & ethics : a journal of the American Society of Law, Medicine & Ethics · 2019Article
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
10 authors.
Funding
Abstract
backgroundUnlike aggregate research on groups of participants with a particular disorder, genomic research on discrete families' rare conditions could result in data of use to families, their healthcare, as well as generating knowledge on the human genome.
objectiveIn a study of families seeking to rule in/out genetic causes for their children's medical conditions via exome sequencing, we solicited their views on the importance of genomic information. Our aim was to learn the interests of parents in seeking genomic research data and to gauge their responsiveness and engagement with the research team.
methodsAt enrollment, we offered participants options in the consent form for receiving potentially clinically relevant research results. We also offered an option of being a "partner" versus a "traditional" participant; partners could be re-contacted for research and study activities. We invited adult partners to complete a pre-exome survey, attend annual family forums, and participate in other inter-family interaction opportunities.
resultsOf the 385 adults enrolled, 79% opted for "partnership" with the research team. Nearly all (99.2%) participants opted to receive research results pertaining to their children's primary conditions. A majority indicated the desire to receive additional clinically relevant outside the scope of their children's conditions (92.7%) and an interest in non-clinically relevant genetic information (82.7%).
conclusionsMost participants chose partnership, including its rights and potential burdens; however, active engagement in study activities remained the exception. Not surprisingly, the overwhelming majority of participants-both partners and traditional-expected to receive all genetic information resulting from the research study.
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