Privacy for research participants
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Privacy for research participants is a concept in
research ethics Research is " creative and systematic work undertaken to increase the stock of knowledge". It involves the collection, organization and analysis of evidence to increase understanding of a topic, characterized by a particular attentiveness ...
which states that a person in human subject research has a
right to privacy The right to privacy is an element of various legal traditions that intends to restrain governmental and private actions that threaten the privacy of individuals. Over 150 national constitutions mention the right to privacy. On 10 December 1948 ...
when participating in
research Research is "creativity, creative and systematic work undertaken to increase the stock of knowledge". It involves the collection, organization and analysis of evidence to increase understanding of a topic, characterized by a particular att ...
. Some typical scenarios this would apply to include, or example, a surveyor doing
social research Social research is a research conducted by social scientists following a systematic plan. Social research methodologies can be classified as quantitative and qualitative. * Quantitative designs approach social phenomena through quantifiable ...
conducts an interview with a participant, or a
medical researcher Medical research (or biomedical research), also known as experimental medicine, encompasses a wide array of research, extending from "basic research" (also called ''bench science'' or ''bench research''), – involving fundamental scientif ...
in a
clinical trial Clinical trials are prospective biomedical or behavioral research studies on human participants designed to answer specific questions about biomedical or behavioral interventions, including new treatments (such as novel vaccines, drugs, dietar ...
asks for a blood sample from a participant to see if there is a relationship between something which can be measured in blood and a person's health. In both cases, the ideal outcome is that any participant can join the study and neither the researcher nor the study design nor the publication of the study results would ever identify any participant in the study. Thus, the privacy rights of these individuals can be preserved. Privacy for medical research participants is protected by several procedures such as
informed consent Informed consent is a principle in medical ethics and medical law, that a patient must have sufficient information and understanding before making decisions about their medical care. Pertinent information may include risks and benefits of treatme ...
, compliance with
medical privacy Medical privacy or health privacy is the practice of maintaining the security and confidentiality of patient records. It involves both the conversational discretion of health care providers and the security of medical records. The terms can also r ...
laws, and transparency in how patient data is accumulated and analyzed. People decide to participate in research for any number of different reasons, such as a personal interest, a desire to promote research which benefits their community, or for other reasons. Various guidelines for human subject research protect study participants who choose to participate in research, and the international consensus is that the rights of people who participate in studies are best protected when the study participant can trust that researchers will not connect the identities of study participants with their input into the study. Many study participants have experienced problems when their privacy was not upheld after participating in research. Sometimes privacy is not kept because of insufficient study protection, but also sometimes it is because of unanticipated problems with the study design which inadvertently compromise privacy. The privacy of research participants is typically protected by the research organizer, but the
institutional review board An institutional review board (IRB), also known as an independent ethics committee (IEC), ethical review board (ERB), or research ethics board (REB), is a committee that applies research ethics by reviewing the methods proposed for research to ens ...
is a designated overseer which monitors the organizer to provide protection to study participants.


Information privacy

Researchers publish data that they get from participants. To preserve participants' privacy, the data goes through a process to de-identify it. The goal of such a process would be to remove protected health information which could be used to connect a study participant to their contribution to a research project so that the participants will not suffer from
data re-identification Data re-identification or de-anonymization is the practice of matching anonymous data (also known as de-identified data) with publicly available information, or auxiliary data, in order to discover the individual to which the data belong. This is ...
.


Privacy attacks

A privacy attack is the exploitation of an opportunity for someone to identify a study participant based on public research data. The way that this might work is that researchers collect data, including confidential identifying data, from study participants. This produces an identified dataset. Before the data is sent for research processing, it is "de-identified", which means that personally identifying data is removed from the dataset. Ideally, this means that the dataset alone could not be used to identify a participant. In some cases, the researchers simply misjudge the information in a de-identified dataset and actually it is identifying, or perhaps the advent of new technology makes the data identifying. In other cases, the published de-identified data can be cross-referenced with other data sets, and by finding matches between an identified dataset and the de-identified data set, participants in the de-identified set may be revealed. This is particularly the case with medical research data because traditional data anonymization techniques designed for numerical data are not as effective for the nonnumerical data contained in medical data, such as rare diagnoses and personalized treatments. Thus, in cases like medical research data that contain unique nonnumerical data, only removing identifying numerical features, such as age and social security number, may not be enough to mitigate privacy attacks.


Risk mitigation

The ideal situation from the research perspective is the free sharing of data. Since privacy for research participants is a priority, though, various proposals for protecting participants have been made for different purposes. Replacing the real data with
synthetic data Synthetic data is information that's artificially generated rather than produced by real-world events. Typically created using algorithms, synthetic data can be deployed to validate mathematical models and to train machine learning models. Data g ...
allows the researchers to show data which gives a conclusion equivalent to the one drawn by the researchers, but the data may have problems such as being unfit for repurposing for other research. Other strategies include "noise addition" by making random value changes or "data swapping" by exchanging values across entries. Still another approach is to separate the identifiable variables in the data from the rest, aggregate the identifiable variables and reattach them with the rest of the data. This principle has been used successfully in creating maps of diabetes in Australia http://onlinelibrary.wiley.com/doi/10.1111/1753-6405.12262/full and the United Kingdom using confidential General Practice clinic data.


Biobank privacy

A
biobank A biobank is a type of biorepository that stores biological samples (usually human) for use in research. Biobanks have become an important resource in medical research, supporting many types of contemporary research like genomics and personalize ...
is a place where human biological specimens are kept for research, and often where
genomics Genomics is an interdisciplinary field of biology focusing on the structure, function, evolution, mapping, and editing of genomes. A genome is an organism's complete set of DNA, including all of its genes as well as its hierarchical, three-dim ...
data is paired with
phenotype In genetics, the phenotype () is the set of observable characteristics or traits of an organism. The term covers the organism's morphology or physical form and structure, its developmental processes, its biochemical and physiological proper ...
data and personally-identifying data. For many reasons, biobank research has created new controversies, perspectives, and challenges for satisfying the rights of student participants and the needs of the researchers to access resources for their work. One problem is that if even a small percentage of genetic information is available, that information can be used to uniquely identify the individual from which it came. Studies have shown that a determination of whether an individual participated in a study can be made even from reporting of
aggregate data Aggregate data is high-level data which is acquired by combining individual-level data. For instance, the output of an industry is an aggregate of the firms’ individual outputs within that industry. Aggregate data are applied in statistics, da ...
.


Negative consequences

When research participants have their identities revealed they may face various problems. Concerns include facing
genetic discrimination Genetic discrimination occurs when people treat others (or are treated) differently because they have or are perceived to have a gene mutation(s) that causes or increases the risk of an inherited disorder. It may also refer to any and all discri ...
from an
insurance company Insurance is a means of protection from financial loss in which, in exchange for a fee, a party agrees to compensate another party in the event of a certain loss, damage, or injury. It is a form of risk management, primarily used to hedge ...
or
employer Employment is a relationship between two parties regulating the provision of paid labour services. Usually based on a contract, one party, the employer, which might be a corporation, a not-for-profit organization, a co-operative, or any othe ...
. Respondents in the United States have expressed a desire to have their research data to be restricted from access by law enforcement agencies and would want to prevent a connection between study participation and legal consequences of the same. Another fear study participants have is about the research revealing private personal practices which a person may not want to discuss, such as a medical history which includes a
sexually transmitted disease Sexually transmitted infections (STIs), also referred to as sexually transmitted diseases (STDs) and the older term venereal diseases, are infections that are spread by sexual activity, especially vaginal intercourse, anal sex, and oral ...
,
substance abuse Substance abuse, also known as drug abuse, is the use of a drug in amounts or by methods which are harmful to the individual or others. It is a form of substance-related disorder. Differing definitions of drug abuse are used in public health, ...
,
psychiatric treatment Psychiatry is the medical specialty devoted to the diagnosis, prevention, and treatment of mental disorders. These include various maladaptations related to mood, behaviour, cognition, and perceptions. See glossary of psychiatry. Initial psych ...
, or an elective
abortion Abortion is the termination of a pregnancy by removal or expulsion of an embryo or fetus. An abortion that occurs without intervention is known as a miscarriage or "spontaneous abortion"; these occur in approximately 30% to 40% of pregn ...
. In the case of genomic studies on families, genetic screening may reveal that paternity is different from what had been supposed. For no particular reason, some people may find that if their private information becomes disclosed because of research participation, they may feel invaded and find the entire system distasteful. An Australian study investigating the violence, bullying, and harassment towards LGBTIQ people revealed that some of the participants, who were all members of the LGBTIQ community, had been subjected to levels of violence that would constitute a crime. However, the participants were reluctant to report their victimization to the police. This meant that the researchers were placed in a position where they could report a crime to the police. However, ethical practices meant that they were obliged to respect the privacy and wishes of the participants and so they could not do so.


Privacy controversies

*
Netflix Prize The Netflix Prize was an open competition for the best collaborative filtering algorithm to predict user ratings for films, based on previous ratings without any other information about the users or films, i.e. without the users being identified ...
– researchers release a database with approximate years of birth, zip codes, and movie-watching preferences. Other researchers say that based even on this limited information, many people can be identified and their movie preferences could be discovered. People objected to having their movie-watching habits become publicly known. *
Tearoom Trade ''Tearoom Trade: Impersonal Sex in Public Places'' is a 1970 non-fiction book by American sociologist Laud Humphreys, based on his 1968 Ph.D. dissertation "Tearoom Trade: A Study of Homosexual Encounters in Public Places." The study is an ana ...
– a university researcher published information revealing persons who engaged in illicit sex, and research participants did not consent to be identified. *


See also

*
Informed consent Informed consent is a principle in medical ethics and medical law, that a patient must have sufficient information and understanding before making decisions about their medical care. Pertinent information may include risks and benefits of treatme ...
*
Statistical disclosure control Statistical disclosure control (SDC), also known as statistical disclosure limitation (SDL) or disclosure avoidance, is a technique used in data-driven research to ensure no person or organization is identifiable from the results of an analysis of ...


References


External links


United States federal policy on privacyPodcast and transcript
from
Scientific American ''Scientific American'', informally abbreviated ''SciAm'' or sometimes ''SA'', is an American popular science magazine. Many famous scientists, including Albert Einstein and Nikola Tesla, have contributed articles to it. In print since 1845, it i ...
interview with
Latanya Sweeney Latanya Arvette Sweeney is an American computer scientist. She is the Daniel Paul Professor of the Practice of Government and Technology at the Harvard Kennedy School and in the Harvard Faculty of Arts and Sciences at Harvard University. She is t ...
{{Research participant rights Clinical research * Research ethics Research participants Clinical research ethics