Tag Archives: anonymity

Risks you should be aware of as study participant

I wrote about this about this basically 15 years ago

Confidentiality has been seen in the past as a fundamental ethical principle in health care and breaching confidentiality is usually a reason for disciplinary action. It has been assigned such a great value because it directly originates from the patient’s autonomy to control his or her own life […] Two types of re-identification are possible: the “Netflix” type and the “profiling” type.

There is a new Cell paper that builds a “profiling” attack using even single-cell gene expression data only

we demonstrate that individuals in single-cell gene expression datasets are vulnerable to linking attacks, where attackers can infer their sensitive phenotypic information using publicly available tissue or cell-type-specific expression quantitative trait loci (eQTLs) information.

So this should be included in informed consent forms also.


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PubPeer should be merged into Pubmed (at some time point)

PubMed had an own comments feature “PubMed Commons” which had been shut down in 2018.

NIH announced it will be discontinuing the service — which allowed only signed comments from authors with papers indexed in PubMed, among other restrictions — after more than four years, due to a lack of interest.

But there is no lack of interest, if we look at the ever increasing rates at PubPeer – the counter today is 122.000.

The main  difference between PubMed Commons and PubPeer is the chance of submitting anonymous comments. While I also see a risk of unjustified accusations or online stalking, I believe that the current PubPeer coordinators handle this issue very well. We can post only issues that are obvious, directly visible or backed up by another source. Continue reading PubPeer should be merged into Pubmed (at some time point)


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Once again genetic testing

I have argued earlier that the free decision of an individual to allow genetic testing, will also reveal data on genetic relatives that have never consented to that procedure.
A new review by Bruce Weir now confirms that “it is reasonably straightforward to find the probability of the genotypes of individuals when their relationship is known…” My current work lets me also assume that with 500,000 SNP data at hand, much individual characteristics of the donor can be reconstructed – there are no anonymous DNAs datasets as some people still believe.
I even fear that genetic testing will increase for example in “homeless” (in vitro fertilized) individuals as these people will want to prevent sibling marriage – see for example the a-China DNA project. Other people may be curious about their genealogy, others about drug side effect prediction, lifestyle, assurance questions…
With every new dataset, available datasets will gradually decrease their anonymity level. I fear that anonymity is not so much a dichotomous property, it is much more a likelihood ratio to stay unknown under the probability to be known. Yea, yea.

Addendum

Time online of Dec 17, 2006 reports that the British police is holding the DNA records of more than 1m innocent people — eight times more than ministers have previously admitted. I wonder if this will affect participation rate of the UK Biobank that targets health of lifestyle, environment and genes in 500,000 people.


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