The UK’s National Blood Service screens all donors for a variety of health and lifestyle risks prior donation. Many are highly sensitive, particularly sexual history and drug use. So I found it disappointing that, after consulting with a nurse who took detailed notes about specific behaviours and when they occurred, I was expected to consent to this information being stored indefinitely. When I pressed as to why this data is retained, I was told it was necessary so that I can be contacted as soon as I’m eligible again to donate blood, and to prevent me from donating before that.
The first reason seems weak, as contacting donors on an annual or semi-annual basis wouldn’t greatly decrease the level of donation (most risk-factor restrictions last at least 12 months or are indefinite). The second reason is a security fantasy, as it would only detect donors who lie at a second visit after being honest initially. I doubt donor dishonesty is a major problem and all blood is tested anyway. The purpose of lifestyle restrictions is to reduce the base rate of unsafe blood because all tests have false negatives. Storing detailed donor history doesn’t even have much time-saving benefit: history needs to be re-taken before each donation, since lifestyle risks can change.
I certainly don’t think the NBS is trying to stockpile data for nefarious reasons. I expect instead that the increasingly low technical costs of storing data speciously justify its very minor secondary uses if one ignores the risk of a massive compromise (NBS gets about 2 M donors per year). I wonder whether the inherent hazard of data collection was considered in the NBS’ cost/benefit analysis when this privacy policy was adopted . Security engineers and privacy advocates would do well to advocate non-collection of sensitive data before fancier privacy-enhancing technology. The NHS provides a vital service but they can’t do it without their donors, who are always in short supply. It would be a shame to discourage anybody from donating and being honest about their health history by demanding to store their data forever.
So what was the outcome – did you decline to consent?
I declined due to limited assurances about privacy
I believe this discussion misses the point. It seems to assume that the nurse understood the question when she replied in the way she did.
In her answer she said nothing about wanting to cross-check the lifestyle details or about associated risks to recipients.
I think she failed to realise that the question was about the lifestyle part of the questionnaire, which is clearly unnecessary for the PURPOSE of recalling donors at the appropriate time. Not donating earlier is about the health of the donor, not about the health of any recipients.
Hence the real point is that the Blodd Donation service should be allowing donors to opt to have their contact details (and blood group) retained but the rest of the information destroyed.