Abstract
In the previous chapter, I examined the ethical issues informed consent in research and argued that thinking about the importance of trust can help us address this issues. In this chapter I will continue some of the themes developed in the previous chapter by reflecting on the relationship between trust and protection of privacy and confidentiality. I will also consider how the trust-based approach deals with some ethical dilemmas related to protecting privacy and confidentiality in research.
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Notes
- 1.
The extent of confidentiality protections provided by CoCs is not well-established, since very few cases have tested the limits of CoCs. In one case, a court allowed a criminal defendant to gain access to confidential research records protected by a CoC to obtain evidence that could be used to discredit the testimony of a witness for the prosecution. The defendant’s attorney wanted to know whether the witness was in a research study protected by a CoC (Beskow et al. 2008).
- 2.
According to the NIH : “It is NIH policy that the results and accomplishments of the activities that it funds should be made available to the public. PIs and funding recipient institutions are expected to make the results and accomplishments of their activities available to the research community and to the public at large (National Institutes of Health 2016a).” It is important to note that until recently some European countries have had laws that restricted access to private health information and inhibited broad sharing of human subjects data. In 2015, the European Union agreed upon legislation to member nations to permit broad sharing of private health information for scientific research (Medical Research Council 2017).
- 3.
According to the Nature Publishing Group (2017): “A condition of publication in a Nature journal is that authors are required to make materials, data, code, and associated protocols promptly available to readers without undue qualifications.”
- 4.
Putting data on a publicly available website is tantamount to publication , since this makes the data available to the public.
- 5.
In the U.S., 911 is the phone number for emergency services, i.e. police, firefighters, ambulance, etc.
- 6.
The National Institute of Environmental Health Sciences conducted a study on the health risks associated with participation in cleanup activities related to the oil spill in the Gulf of Mexico in 2010. Some of the subjects in the study threatened to harm themselves of others during interviews. See Resnik et al. (2015a).
- 7.
In the law, credible evidence is evidence that is “worthy of belief; trustworthy (Black’s Law Dictionary 2001:250).”
- 8.
In the law, reasonable suspicion is defined as a suspicion which is “supported by specific and articulable facts (Black’s Law Dictionary 2001:584).”
- 9.
By “affected” I mean family members who have a significant chance of having the genetic variant(s). For example, if a man has the Huntington gene, his daughter but not his wife would be affected. If a woman has BRCA1 mutations associated with increased cancer risk, he daughter(s), sister(s), grandmother(s), niece(s), aunt(s) and mother could all be affected.
- 10.
For example, researcher could publish the sequence of a gene many people have in common but not sequences, such as single nucleotide polymorphisms, which can identify individuals.
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Resnik, D.B. (2018). Privacy and Confidentiality. In: The Ethics of Research with Human Subjects. International Library of Ethics, Law, and the New Medicine, vol 74. Springer, Cham. https://doi.org/10.1007/978-3-319-68756-8_6
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