Evidence map›Paper›PMID 31189727›Full record

ArticleJournal of medical ethics2019

Is it acceptable to contact an anonymous egg donor to facilitate diagnostic genetic testing for the donor-conceived child?

Rachel Horton, Benjamin Bell, Angela Fenwick, Anneke M Lucassen

Abstract read
In one paragraph

Article in Journal of medical ethics, 2019. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 7 papers.

0numbers the graph read from it
0cells of the map it votes in
7citing 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

7 citing papers in PubMed.

  1. Article
  2. Article
  3. Article
  4. Mapping Ethical, Legal, and Social Implications (ELSI) of gamete donation.Journal of assisted reproduction and genetics · 2024
    Review
  5. Ethical Considerations in Research with Genomic Data.The New bioethics : a multidisciplinary journal of biotechnology and the body · 2023
    Article
  6. Article
  7. Article
4 · The record

Corrections and comments

5 · Who and what money

Authors and funding

4 authors.

Rachel HortonFaculty of Medicine, Clinical Ethics and Law, University of Southampton, Southampton, UK.ORCID 0000-0001-6080-6354
Benjamin BellFaculty of Medicine, Southampton Medical School, University of Southampton, Southampton, UK.
Angela FenwickFaculty of Medicine, Clinical Ethics and Law, University of Southampton, Southampton, UK.
Anneke M LucassenFaculty of Medicine, Clinical Ethics and Law, University of Southampton, Southampton, UK.ORCID 0000-0003-3324-4338

Funding

Wellcome TrustWellcome Trust 208053/Z/17/Z
6 · The paper itself

Abstract

We discuss a case where medically optimal investigations of health problems in a donor-conceived child would require their egg donor to participate in genetic testing. We argue that it would be justified to contact the egg donor to ask whether she would consider this, despite her indicating on a historical consent form that she did not wish to take part in future research and that she did not wish to be informed if she was found to be a carrier of a 'harmful inherited condition'. We suggest that we cannot conjecture what her current answer might be if, by participating in clinical genetic testing, she might help reach a diagnosis for the donor-conceived child. At the point that she made choices regarding future contact, it was not yet evident that the interests of the donor-conceived child might be compromised by her answers, as it was not foreseen that the egg donor's genome might one day have the potential to enable diagnosis for this child. Fertility consent forms tend to be conceptualised as representing incontrovertible historical boundaries, but we argue that rapid evolution in genomic practice means that consent in such cases is better seen as an ongoing and dynamic process. It cannot be possible to compel the donor to aid in the diagnosis of the donor-conceived child, but she should be given the opportunity to do so.

Indexed as

ConfidentialityGenetic Diseases, InbornGenetic TestingHumansOocyte DonationTissue Donorsethicsgenetic informationgenetic screening/testinginformed consentreproductive medicine

Identifiers

PMID31189727
PMCPMC6613744

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Registered trials

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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.