The last thing I thought would result from my cancer diagnosis was a begging letter from the Institute of Cancer Research. It informed me that my details were obtained from a business called The Museums Collection, from which I had over the years made various small purchases.

That was the second such link to the Museums Collection within a week. As is my practice since GDPR (General Data Protection Regulation) came into force last year, I had responded to a mail shot from yet another charity, demanding they remove my information from their database as I had never given them permission to hold it. They agreed, informing me they had obtained my details from Museums Collections by “renting” their mailing list, again without my permission. On trying to establish my marketing preferences (essentially “no” to the 98% from whom I do not choose to hear) I found 150 marketing companies with access to my information, many of whom supply mailing information for a fee to charities such as the Institute of Cancer Research.

The Immunology team leader who rashly signed the letter from the Institute of Cancer Research has my reply, questioning the ethics of this practice. But a family member working in the charity sector tells me it is common practice,  charities paying thousands of pounds to “rent” lists where those on them are assumed to have a particular interest in or experience of the groups the charity supports.

This happens with the full knowledge of both government and major funders such as the National Lottery, Comic Relief, etc., so specific funding for this practice is provided as a sort of contract between the charity and the funder, whereas pre 2008 there were straight grants.

This is to cater for the ever-increasing needs of health charities among others and cancer charities were some of those on a Guardian list of the top 1,000 fund-raisers in the UK, ranging from big hitters like Cancer Relief UK to smaller foundations . What the donating public may not know about the present system, is that many of the larger charities obtain funding before contracting out their support needs/research etc to smaller ones, thus holding the purse strings.

This is hardly what Family X, signing up to a Direct Debit for research into lymphodoema, for instance, would imagine. Sadly,  Family X are not typical of the British public, most of whom do not donate at all or prefer to do it by responding with texts to big TV or event-based calls for donations. Thus the majority of Brits are highly unlikely to ensure that they have ticked that little box saying “No” to further marketing.

There was a lot of righteous indignation some time ago when the salaries of directors of some of the largest UK charities were revealed as being sums more usually associated with bankers and hedge fund managers. The charities claimed such large salaries were necessary to obtain the top talent required to ensure funding for their worthy enterprises, but after the financial crisis of 2008 some of that “talent” came from the financial sector with its’ emphasis on building business, not supporting the vulnerable or researching disease.

This more contractual nature of charity funding has increased the amount of data they have to provide, as determined by the funders – though not always for a clear benefit or purpose. Though not always anonymised nor even used, this can be demanded every 6 months so a charity is seldom assured of funding for more than 18 months..

At a time when cyber crime is the most rapidly increasing criminal activity and  we are told to guard our identities with extreme caution, it is reasonable to ask how far charities “renting” mailing lists and defining interest groups for their own financial gain is ethical, given the risk it poses to our individual security? Are our personal health records being accessed to identify us as , say, living with diabetes or having received cancer treatment?

How are lists of potential funding targets compiled without more detailed information than simply one’s name and address? How is the cyber security of all that regular submission of data from charities to their funders assured?

 At a time when Action Fraud is at full stretch and  Ben Wallace, the Security Minister, assured me that much more was being spent and done by the present administration to ensure our cyber security, this smacks of the right hand not knowing what the left is doing with regard to official charity funding.

Having been through medical ethics committees’ scrutiny of any research involving their patients, I find “renting” mailing lists morally questionable- particularly without the consent of involuntary targets like you and me.

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1 Comment on Rentasecret

  1. Strange. I’ve been on three clinical trials for CLL cancer in NHS university teaching hospitals over the past 11 years and received nothing like this. Could you be in a private hospital with looser standards?