An offer you can’t refuse?

Everyone has been asked to 'contribute their opinions' to a survey, frequently at dinnertime. We are contacted by mail and email and asked for information by companies, spammers and 'phishers'. Sometimes we like to be asked, most of the time it's a time-wasting nuisance, and with ever-increasing frequency – responding is downright dangerous.

If you clip out a contest form for a great kitchen makeover – and who couldn't use that? - What information is requested? Name, address and phone number? Email address? Which major kitchen appliance(s) you intend to purchase in the next year? You've just provided a marketing firm with contact information for direct-to-you advertising. Your postal code gives a good idea of your income, and your information will be sold to other companies. In the end, who benefits? Unless you’re the winner of the kitchen, the marketing firm benefits.

An area of information gathering that requires our vigilance has to do with our personal or health information. We provide our physicians with our personal health information, which is filed electronically or on paper. If we get a prescription, the pharmacist keeps a record and sends information to the province. More and more provinces are implementing an electronic database that will record our health status and treatments, and eventually this program will be Canada-wide. Wherever we go, our health information will follow. Convenient, but who can access this information? Technically, only those medical professionals and government professionals who need to see it will see it. However, clerks enter the information and information technology (IT) staff is responsible for keeping the system up, running and current. They can see it too. Is it safe to trust them, the professionals, and the system? Probably. Is it a sure thing? No. Remember, computers crash, paper medical records have been found blowing down streets, and not long ago it was revealed that pharmacists routinely sold both doctor prescribing practices and patient information to pharmaceutical companies. In BC the Medical Services Plan (MSP) is administered by a US corporation that is bound by the Homeland Security Act.

What about research databases and tissue banks? Good question. Someone – perhaps your physician – asks if you will help research efforts into your disease by contributing your specific disease-related information to a database, maybe along with a blood or other tissue sample. Good idea? To decide that, you need some answers. Some of the questions you need to ask are these: What will this information and / or the tissue samples, samples be used for? How long will this information / tissue be kept? Can information or samples be used for any other purpose in the future? Will my identity be stripped from this information? Who has access to this information? Do I? Who 'owns' my DNA / tissue / information? Will my information be updated at regular intervals? How, and by whom? All these questions are important. Take access to the information, as an example. Will your information / DNA only be used by one researcher? Researchers across Canada? Internationally? Shared with other databanks? Can your insurance company see it or get a report? Your employer? What about your kids? And, if the databank decides to close, what happens to your information and tissue samples?

How about private companies that recruit patients and run clinical trials? Is there any challenge in this? Yes, there is, in some instances more so than in others. Not all multi-centre clinical trials are administered in the same way. Some are approved by local university or institution / hospital Research Ethics Boards (REBs). Any questions that patients have are answered locally, if necessary sometimes by the REB. Local knowledge is available. Some multi-centre clinical trials are run by a private company that recruits the physicians for the pharmaceutical company that sponsors the trial, and also recruits the study participants. There are several such companies, some better than others, and most located in the US. They now are beginning to operate in Canada as well. These companies usually use a central REB for approval, and one REB may approve the trial for many or all sites across the country. In this case, if a trial subject has a question, the 1-800 phone number may ring in Boston, or Dallas. Nothing wrong with that, except that local knowledge is eliminated, and this may be critical to understanding and subject safety. There are several things to watch for. One is that language is sometimes manipulated to increase subject recruitment. For instance you may see a reference to the study drug as a “medical treatment” rather than “trial intervention” or “investigational drug”. This isn't 'wrong', but by failing to call an experimental treatment “experimental”, the recognition of risk is reduced. Look for realistic phrases such as “potential harms”, or “weighing potential benefits against possible harms.” You want to be told the truth so you can truly come to an informed decision about your participation. You may be promised remuneration for participation, or “free” medical care while you are participating. Both of these inducements are frequently found in US recruitment ads, and both create a number of ethical questions.

Ask questions. Above all, keep in mind the subject of research bears the risks of research. And that those who provide unnecessary information bear the risk of eternal dinnertime phone calls.