| Title |
The Right to Know and the Right Not to Know Revisited: Part One
|
|---|---|
| Published in |
Asian Bioethics Review, July 2017
|
| DOI | 10.1007/s41649-017-0012-1 |
| Pubmed ID | |
| Authors |
Roger Brownsword, Jeff Wale |
| Abstract |
Prompted by developments in human genetics, a recurrent bioethical question concerns a person's 'right to know' and 'right not to know' about genetic information held that is intrinsically related to or linked to them. In this paper, we will revisit the claimed rights in relation to two particular test cases. One concerns the rights of the 500,000 participants in UK Biobank (UKB) whose biosamples, already having been genotyped, will now be exome sequenced, and the other concerns the rights of pregnant women (and their children) who undergo non-invasive prenatal testing (NIPT)-a simple blood test that can reveal genetic information about both a foetus and its mother. This two-part paper is in four principal sections. First, we sketch the relevant features of our two test cases. Secondly, we consider the significance of recent legal jurisprudence in the UK and Singapore. Thirdly, we consider how, the jurisprudence apart, the claimed rights might be grounded. Fourthly, we consider the limits on the rights. We conclude with some short remarks about the kind of genetically aware society that we might want to be and how far there is still an opportunity meaningfully to debate the claimed rights. |
X Demographics
The data shown below were collected from the profiles of 12 X users who shared this research output. Click here to find out more about how the information was compiled.
Geographical breakdown
| Country | Count | As % |
|---|---|---|
| Germany | 1 | 8% |
| Netherlands | 1 | 8% |
| France | 1 | 8% |
| Spain | 1 | 8% |
| Unknown | 8 | 67% |
Demographic breakdown
| Type | Count | As % |
|---|---|---|
| Members of the public | 10 | 83% |
| Scientists | 2 | 17% |
Mendeley readers
The data shown below were compiled from readership statistics for 37 Mendeley readers of this research output. Click here to see the associated Mendeley record.
Geographical breakdown
| Country | Count | As % |
|---|---|---|
| Unknown | 37 | 100% |
Demographic breakdown
| Readers by professional status | Count | As % |
|---|---|---|
| Student > Master | 8 | 22% |
| Student > Bachelor | 6 | 16% |
| Researcher | 5 | 14% |
| Student > Ph. D. Student | 5 | 14% |
| Other | 3 | 8% |
| Other | 2 | 5% |
| Unknown | 8 | 22% |
| Readers by discipline | Count | As % |
|---|---|---|
| Medicine and Dentistry | 7 | 19% |
| Social Sciences | 5 | 14% |
| Biochemistry, Genetics and Molecular Biology | 4 | 11% |
| Psychology | 3 | 8% |
| Engineering | 2 | 5% |
| Other | 5 | 14% |
| Unknown | 11 | 30% |
Attention Score in Context
This research output has an Altmetric Attention Score of 27. This is our high-level measure of the quality and quantity of online attention that it has received. This Attention Score, as well as the ranking and number of research outputs shown below, was calculated when the research output was last mentioned on 21 November 2022.
All research outputs
#1,311,485
of 23,803,225 outputs
Outputs from Asian Bioethics Review
#16
of 242 outputs
Outputs of similar age
#27,137
of 313,596 outputs
Outputs of similar age from Asian Bioethics Review
#2
of 9 outputs
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So far Altmetric has tracked 242 research outputs from this source. They typically receive more attention than average, with a mean Attention Score of 8.7. This one has done particularly well, scoring higher than 93% of its peers.
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