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Privacy and the right to consent are all some people have left. But not for long.

by Hilary Stace

Community organisations funded by the Ministry of Social Development under the Government’s Social Investment Strategy will soon have to hand over detailed identifiable information about their clients to the Government to get funding. This shockingly unethical policy was revealed by veteran NZ Herald journalist Simon Collins in October last year, but it has taken some time to be noticed more widely.

I was so horrified by the contravention of basic ethical principles of informed consent, confidentiality and the promotion of coercion that I spoke about it at January’s NZ Bioethics Conference in Dunedin. So I am pleased it is now being investigated by the Privacy Commissioner, and the community sector is fighting back

So-called ‘big data’ is fashionable and many are excited at the potential of these massive quantities of data for understanding and answering complex policy questions. However, big data is also a political tool which can be manipulated by those who fund or have access to it. Much has been written about Cambridge Analytica’s success in constructing a profile of each US voter in order to identify, target and encourage every Trump vote. Big data is not benign so we really shouldn’t be surprised that our current Government is also using it to implement a political ideology.

The Social Investment Strategy has been championed by PM Bill English. The theory is that with big datasets you can identify who is ‘vulnerable’ (which can also be code for a lot of other things such as being poor, brown or powerless) and you invest targeted resources in them so they improve their own lives and stop being vulnerable.

The Ministry of Social Development website describes the role of its Community Investment Strategy in implementing the policy:

The Ministry of Social Development invests over $300 million in community-based social services each year. These services help support our most vulnerable children, young people and adults to be safe, strong and independent. The Community Investment Strategy … helps ensure that these services are targeted at the right people and the right communities, based on evidence of what works…A social investment approach is about providing up-front investment to support people most at risk of poor outcomes later on in life. We will use the technology and data available to help us understand the people who rely on the programmes and services we invest in.

One of six key elements of the approach is: Improving the quality of data collection ‒ including individual client level data collection.

The State funds more than 800 approved community organisations to provide certain services through the MSD’s $330 million Community Investment fund. These organisations include women’s refuges, counselling services and budgeting agencies. Under new contracts which come into effect in July the Government will require these community organisations to hand over personal client information to the Government to get funding to provide those services.

These personal details include each client's name, address, date of birth, gender, ethnicity, iwi, country of birth, number of dependent children, birth date of the youngest dependant, and details about the service they receive.

Clients who refuse written consent or service providers who do not provide the personal information of clients to Government will be penalised by the removal of funding.

The data will be initially "anonymised" – which as ethicists know does not protect anonymity ‒ but from July this year will identify individuals. The data will be used to track the outcomes of services for individuals – i.e., become part of bigger Government databases – although how collecting the data will answer any useful questions is unclear.

This move is of course a concern for many who work with already marginalised people, as it will undermine people's trust in non-government agencies. There are fears that some of the most vulnerable people, such as those leaving violent relationships, with disabled children or in financial need may be scared off seeking help in case their disclosures are used to take their children from them or stop their benefits. Privacy and the right to consent are all some people have left.

Guidelines for the new contracts say agencies can still voluntarily help people who do not consent to share their details with the Government, but the organisations will not get funding for those clients.

This policy also compromises every agency and every professional who will now not be able to provide a confidential service. Commitments to confidentiality, which are part of many professions’ codes of ethics, will have to be overlooked.

Ethically, this whole policy sets off alarm bells. Informed consent, a basic ethical principle which can be traced back to the Nuremberg Trials, is being flouted by our Government for some mythical, magical benefits from ‘big data’. It is part of the bigger principle of respect:

  • Research should respect persons and populations. This means informed and ongoing consent, consultation, cultural awareness and safety.

For an individual to give valid informed consent, three components must be present: disclosure, capacity and voluntariness.

  • Voluntariness refers to the subject’s right to freely exercise his/her decision making without being subjected to external pressure such as coercion, manipulation, or undue influence. (According to Wikipedia)

This new policy is surely coercion. Give your personal identifiable information to the Government – or no service.

As well as the breaches of confidentiality and informed consent, there is concern that the new policy amounts to surveillance. This is a powerful tool to keep the citizens in check and there are valid concerns that some people with major issues won’t come forward because that information could be used against them by Government.

Fortunately then (from October 2016):

The Government has denied that requiring community agencies to hand over data about their clients amounts to "surveillance". Associate Social Development Minister Jo Goodhew says community agencies such as women's refuges and budgeting agencies will only have to share specified "client-level data" with the Government as a condition for funding from next July.

"The collection of individual client-level data is most definitely not 'surveillance' in any way," she said."Only the client-level data that has been included in the contracts will be shared with Government. All providers will obtain consent from clients to do so. When obtaining written consent the providers will be able to assure clients that no wider detail will be passed on… Any fears about the security of this data are unfounded."

However, Green MP Jan Logie is concerned at this shocking new policy, and in the same article said:

"The independence of the community sector is a strength, and to undermine that independence is a mistake. When people turn for help from community groups, they expect help, not a Government investigation of every aspect of their life. When Government privacy issues have proven time and time again to not be reliable or value personal privacy, it is hardly surprising that there would be suspicion of handing over further data."

Many of us remember when a former Minister of Social Development used confidential welfare data to attack two single mothers who had criticised her. Shrinking attention to ethics by many political leaders is a concern. With cross-matching between databases, and the possibility of hacking, individual privacy and confidentiality needs more attention, not less.

The current enthusiasm for the use of big data to somehow fix vulnerable people is misplaced and instead continues their oppression. The new contracts required by community organisations under the Community Investment approach ethically compromise clients, professionals and agencies – and all of us who let such things happen are complicit. We need to take back our citizenship rights.

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