Evidence map›Paper›PMID 30145751›Full record

ArticlePrevention science : the official journal of the Society for Prevention Research2018

Genomics, Big Data, and Broad Consent: a New Ethics Frontier for Prevention Science.

Celia B Fisher, Deborah M Layman

Abstract read
PubMed Full text at PMC Publisher
In one paragraph

Article in Prevention science : the official journal of the Society for Prevention Research, 2018. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 24 papers.

0numbers the graph read from it
0cells of the map it votes in
24citing papers in PubMed
–field-weighted citation impact
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

24 citing papers in PubMed.

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  19. Editorial - ethical practice and genomic research.Global bioethics = Problemi di bioetica · 2020
    Article
  20. Impact of industry 4.0 to create advancements in orthopaedics.Journal of clinical orthopaedics and trauma · 2020
    Article
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

2 authors.

Celia B FisherDepartment of Psychology, Fordham University, Dealy Hall 441, East Fordham Road, Bronx, NY, 10458, USA. Fisher@fordham.edu.ORCID 0000-0002-3849-7281
Deborah M LaymanDepartment of Psychology, Fordham University, Dealy Hall 441, East Fordham Road, Bronx, NY, 10458, USA.

Funding

No grant is acknowledged in the PubMed record.

6 · The paper itself

Abstract

Emerging technologies for analyzing biospecimens have led to advances in understanding the interacting role of genetics and environment on development and individual responsivity to prevention and intervention programs. The scientific study of gene-environment influences has also benefited from the growth of Big Data tools that allow linking genomic data to health, educational, and other information stored in large integrated datasets. These advances have created a new frontier of ethical challenges for scientists as they collect, store, or engage in secondary use of potentially identifiable information and biospecimens. To address challenges arising from technological advances and the expanding contexts in which potentially identifiable information and biospecimens are collected and stored, the Office of Human Research Protections has revised federal regulations for the protection of human subjects. The revised regulations create a new format, content, and transparency requirements for informed consent, including a new mechanism known as broad consent. Broad consent offers participants a range of choices regarding consent for the storage and future use of their personally identifiable data. These regulations have important implications for how prevention scientists and oversight boards acquire participant consent for the collection, storage, and future use of their data by other investigators for scientific purposes significantly different from the original study. This article describes regulatory changes and challenges affecting traditional informed consent for prevention research, followed by a description of the rationale and requirements for obtaining broad consent, and concludes with a discussion of future challenges involving ongoing transparency and protections for participants and their communities.

Indexed as

Big DataEvidence-Based PracticeHumansInformed ConsentPreventive Health ServicesResearch DesignBroad consentGeneticsInformed consentPrevention sciencePrivacyResearch ethics

Identifiers

PMID30145751
PMCPMC6182378

What OpenQuestion holds

Textmetadata
LicenceCC BY
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 OpenQuestion graph.