Wednesday, 29 August 2007

Safety fears over new register of all children

The headline is from The Times in the UK but the concerns apply everywhere that a 'database' is seen as solution to a communication problem.
ContactPoint was set up after the official report into the death of Victoria ClimbiĆ©. Lord Laming concluded that the eight-year-old’s murder could have been prevented had there been better communication between professionals.
Communication is not the same as broadcasting or publication. There is a sense of checks and balances between the participants in a communication. This is rarely apparent in stores of data offered to people on the basis of the role they undertake.
As Tom Fuller points out persons having a particular role are not necessarily to be trusted with the information. There will be inevitable bad eggs present in teaching; medical; legal; social work professions; and the police. Also leakage of information which should be private to the individual can occur from simple careless behaviour of otherwise trustworthy individuals. Sadly, assigning information access rights to a role (for example, head-teacher), does not prevent individual head-teachers delegating that responsibility to a temporary secretary which is probably not how the legislators or system designers saw the 'database' being acceptable.
In conventional communication, each request for information can trigger a question in the mind of the receiver about the possible use being made of the information provided. Ideally, technology solutions to the communication problems around public safety, health information and other privacy-loaded areas should not bypass these checks and balances. Given the risk of misuse of information by persons in a position of trust through their role, technology solutions should ensure that the minimum (necessary) information is released and that a clear trail of information release is maintained. If an authorised person enquires on such a database, they should expect to face enquiries themselves as to why and how the information was used. The kind of pattern analysis that detects potential credit card fraud should be applied to detect the abusers of the information systems.

Thursday, 9 August 2007

Health Information Privacy - When Rights Conflict

Tom Fuller writing in the respectable Blindside Blog presents a simple dilemma on the conflicting "rights" to have and to conceal information about a health issue.

As part of your treatment you need genetic analysis of predisposition towards several disease pathways. You are frightened that exposure of the results will a) reveal your mixed race heritage and b) prejudice your employability, insurability and sociability. So you agree with your consultant to test under an alias. And your treatment proceeds and you get on with your life.

Unbeknownst to you (does Beyonce have an evil twin called UnBeyonce?), your consultant also treats your child/children from a previous relationship, and recognizes that your genetic results are relevant to them. Your consultant knows that you would refuse to release your information, but their continued good health is dependent on having this information available. Just for the sake of preserving the moral dilemma, getting the genetic information from the children is not adequate, sufficient or practical (they live now in a foreign country, or something like that).

1. Is your right to control of information regarding your genetic history absolute?
2. Does your consultant have ethical responsibilities to act despite your desire for secrecy?
3. If sperm donors are required to disclose identity to their children, is a precedent established for requiring you to yield your genetic information?
4. Who should make the final decision?

With local health authorities taking a generous approach to information sharing citing "common good" but more likely for administrative convenience (see Patients' privacy could be compromised by health b...), the opportunity to consider cases like the one presented will be swept aside.

My view ... 1. Yes ; 2. No, not outside the individual patient - carer relationship ; 3. Probably, in a legal sense. This is a bad thing! Genetic information is probably the ultimate in "identity" information; 4. The patient fully informed by consultant.

Friday, 3 August 2007

Visualisation of Boring Statistics

Jon Udell has been working on making public data more accessible. His interesting example of local crime statistics brought to mind an early example of crime hotspot mapping here in New Zealand ... apparently police stations are the source of crime. Jon even showed that crime moves with the police stations ! He is "thinking about ways to meld Python and Excel together more closely" You might like to try OpenOffice which supports Python directly. Unfortunately the current charting model still lets OpenOffice down.