Communication is a key component of research. If there is not sufficient communication between both the researcher and the subject, then one party may misinterpret an action or statement from the other party. Let’s look at the case of the Nuuh chah nulth Nation to gain a better understanding of the issue. In 1981, a researcher named Dr. Ward conducted research and collected blood samples on the Nuuh chah nulth to examine if there was a genetic predisposition between the Nuuh chah nulth nation and rheumatoid arthritis. After research was conducted, no genetic predisposition was found. However, Dr. Ward continued to use the blood samples and data he previously collected to further his research on the history of First Nations. The Nuuh chah nulth were outraged and devised a council that would work to gather all of the data that was misused. Although it was years before the blood samples were returned to the council, the damage had already been done.
One of the main issues I would like to focus on is that the patients were not informed. After the Nuuh chah nulth openly allowed the researcher to enter their community and conduct research, they were exploited and not informed of the results as they were promised. The blood samples were then distributed throughout the scientific community for a variety of studies unrelated to arthritis, such as HIV/AIDS. These results humiliated the Nuuh chah nulth and left them in the dark about their lab results.
The problem with not informing the Nuuh chah nulth about the intent to use their blood samples for other purposes is that it destroys trust between the researcher and the research subject. The Nuuh chah nulth complied with the researcher and gave blood samples, because they hoped the information would allow them to learn more about their genetic history. However, when the researcher decided to change his mind on divulging information to the subject, and instead used the samples for other purposes, the trust between the subject and the researcher is damaged. Furthermore, when the Nuuh chah nulth obtained their blood samples back, they never received an apology from any of the parties involved. Because of this, the Nuuh chah nulth are less likely to allow another researcher to study their community.
As it turns out, there have also been other cases where patient information is misused or their privacy has been invaded. In 2016, it was discovered that some private health insurers may have gained access to patient information, such as which dentists they visited and how much they charged for a specific procedure. This could allow insurance companies to tailor their prices to make them more competitive. Although this is legal under HICAPS, the clause for the use of confidential information between private insurers and dentists, some policy workers are working to revise this legislation. In a more extreme case, a woman in Hawaii was able to access the medical records of another woman and reveal confidential information, such as the fact she was diagnosed with AIDS. Although the woman was charged and sentenced to a year in prison, one has to question the extent to which our medical information is available to the general public.
These are interesting questions to be addressed in health policy. Although I personally believe that information on patients should be used at their discretion, this is not always the viewpoint of physicians, researchers, or private insurers. By always confirming with the patient on whether their results are safe to be used, researchers can be limited in the scope of what they want to accomplish. This may deny them grant funding, prestige, or even higher incomes. However, if the patient’s privacy is not respected, then there may not be data to collect, and research would be halted altogether. Let me know what you think down below.
Citation:
Amaguin, Roman. “Hospital Employee’s Misuse of Personal Health Information: A Wake Up Call for Hawaii Employers.” Hg.org. N.p., n.d. Web. 24 Feb. 2017.
Bailey, Michael. “Private Health Funds Accused by Dentists of Misusing Patient Data for Commercial Gain.” Financial Review. N.p., 25 July 2016. Web. 24 Feb. 2017.
Thomas, John E., Wilfrid J. Waluchow, and Elisabeth Gedge. Well and Good: A Case Study Approach to Health Care Ethics. Peterborough, Ontario: Broadview, 2014. Print.
Hey Kenquavius,
I’m glad you shed light on the medical record market, a growing sector that profits off supposed private information. Whenever I go on Facebook and see an advertisement for the shoe store website I had visited a few hours earlier, I cringe. If big brother is interested in my petty spending habits, why wouldn’t they be even more attentive to critical habits and factors in my life (and wallet)? Of course I’m concerned about my private records being used without my consent but I’m more worried about what the records are being used for. In one recent case, Carolinas HealthCare bought data on 2 million consumers with the intention of creating an algorithm that generates a patient’s “risk score” based on several risk factors (Jennings, 2014). This score could not only be used by physicians to more quickly and accurately diagnose conditions based on risk factors, but by big pharmaceuticals and to assess health care costs. This kind of information could lead to negative impacts especially to those in lower SES who are more likely to have a high “risk score” based on environmental factors. The last thing we need in our American health care system is more disparity between classes and exploitation of the poor.
Sources:
Jennings, Katie (2014) How Your Doctor and Insurance Will Know Your Secrets- Even If You NeverTell Them. Business Insider
http://www.businessinsider.com/hospitals-and-health-insurers-using-data-brokers-2014-7
Hi Kenquavius,
I really appreciated your post, as I think that violations to privacy are a growing problem in our health care system. I agree with your argument, as the researcher clearly exploited the Nuu chah nulth Nation. The lack of consent to conduct additional research on the population’s blood samples may create a dangerous precedent—certain populations may not want to provide valuable scientific data in the future due to a heightened fear of exploitation. As you pointed out in your argument, the trust between researcher and subjects is destroyed. This may be highly detrimental to the scientific advancement, as individuals will be unwilling to participate in future studies due to a lack of respect for the subject’s consent.
Although I wholeheartedly agree with your argument and stance, I think it may be valuable to consider a counterargument. Do you think that the Nuu chah nulth Nation would have consented to additional research, knowing that the studies were on sensitive medical topics like HIV/AIDS? Essentially, I think that a utilitarian may argue that the research may produce a greater amount of good due to the advancement in scientific knowledge. Therefore, Dr. Ward would be justified in exploiting this population and not seeking additional consent under this argument.
In my opinion, the stated counterargument creates a dangerous precedent. We cannot exploit populations merely for scientific advancement, as certain vulnerable populations would be unjustly targeted for research. There is a profound need for consent to ensure that trust continues between researchers and subjects.
If the privacy and collection methods for these studies is not properly disclosed, then the information should not be collected. Many researchers may believe or intend that the data they collect will only be used for one or two studies they perform, but it is very easy for that data to end up being shared with others.
I agree that there is a risk of losing trust between researchers and subjects if researchers do not do a good job of disclosing terms or betray the patient trust later by giving away their information when they are not supposed to.
I also really appreciate that you bring up the idea that ensuring patients know the full terms might compromise time and funding for projects. Because the competition to get funding and publish research is so high, the scientific environment can contribute to the problems of ensuring patient information safety.