Evidence map›Paper›PMID 41251891›Full record

ArticleJournal of community genetics2025

"Would you want to know?" Questions of utility and responsibility in Italian laypersons' preferences about genetic risk communication.

Lea Godino, Daniela Turchetti, Linda Battistuzzi, Liliana Varesco, Elena Nardi, Vanessa Gentili, Paolo Chiari, Alvisa Palese

Abstract read
In one paragraph

Article in Journal of community genetics, 2025. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 3 papers.

0numbers the graph read from it
0cells of the map it votes in
3citing 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

3 citing papers in PubMed.

  1. Article
  2. Article
  3. 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

8 authors.

Lea GodinoMedical Genetics Unit, IRCCS Azienda Ospedaliero-Universitaria Di Bologna, Bologna, Italy. lea.godino@students.uniroma2.eu.ORCID http://orcid.org/0000-0002-3763-9372
Daniela TurchettiMedical Genetics Unit, IRCCS Azienda Ospedaliero-Universitaria Di Bologna, Bologna, Italy.ORCID http://orcid.org/0000-0002-6792-3921
Linda BattistuzziMedical Oncology Unit 2, IRCCS Ospedale Policlinico San Martino, Genoa, Italy.
Liliana VarescoUnit of Hereditary Cancer, IRCCS Ospedale Policlinico San Martino, Genoa, Italy.ORCID http://orcid.org/0000-0003-4871-6668
Elena NardiResearch and Innovation Unit, IRCCS Azienda Ospedaliero, Universitaria Di Bologna, Bologna, Italy.
Vanessa GentiliDepartment of Biomedicine and Prevention, University of Rome "Tor Vergata", Viale Montpellier, 1- 00128, Italy, Rome, Italy.
Paolo ChiariDepartment of Medical and Surgical Sciences, University of Bologna, Bologna, Italy.ORCID http://orcid.org/0000-0003-1629-3410
Alvisa PaleseDepartment of Medicine, University of Udine, Udine, Italy.ORCID http://orcid.org/0000-0002-3508-844X

Funding

No grant is acknowledged in the PubMed record.

6 · The paper itself

Abstract

We surveyed the preferences of Italian laypersons (n = 609) regarding the communication of genetic risk information to and within families, presenting scenarios about three genetic conditions (Cystic Fibrosis, CF; Hereditary Cancer, HC; and early-onset Alzheimer's disease, AD). We found that almost all of the participants (565/609, 93%) were interested in receiving genetic risk information about at least one of the diseases, and 95% of these also stated they would have genetic testing. Interestingly, 78% of participants in this subset wanted to be informed of their genetic risk and have testing for all the genetic conditions presented in the survey. The main motivating factors were prevention for HC, reproductive responsibility for CF, and life-planning and emotional preparedness for AD, covering a range of elements of clinical, health-related and personal utility. In addition, over a third of our study participants (198/565, 35.0%) indicated that both family members and healthcare professionals are morally responsible for communicating genetic risk information; over a fourth (148/565 26.2%) felt that the responsibility lies with everyone involved: family members, healthcare professionals and also themselves. Findings indicate that bringing into focus individual needs that go beyond medical care may help improve communication about genetic risk and informed choices about genetic testing. Moreover, the Italian public opinion may be open to the possibility of a proactive role for healthcare professionals in disseminating genetic risk information to family members, particularly within the frame of a collaborative effort.

Indexed as

Cross-sectionalGenetic informationGenetic riskMoral responsibilityPublic

Identifiers

PMID41251891
PMCPMC12627293

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.