But, some research suggests the opposite may occurrespondents may express a desire to publish data that researchers would have deemed too sensitive for publication. Anticipating ones audience presents challenges. By granting access privileges to each of the research projects electronic folders to the group as a whole, newly authorized members of the project team can obtain access to all related electronic data resources by just being added to the group. Guillemin and Gillam (2004) refer to the process of obtaining approval to conduct research as procedural ethics. They note that procedural ethics, while useful for prompting researchers to think about ethical issues, is largely a formality that cannot address the specific ethical dilemmas that arise in qualitative research. ensor However, the literature on research design, research ethics, and the American Sociological Association (ASA) Code of Ethics say little about how to handle the risk of deductive disclosure when presenting detailed qualitative data (Tolich, 2004). In: Brettell C, editor. Researchers occupy a position of respect and trust in the community. Moreover, although little is known about how study participants respond to having their data altered, Corden and Sainsbury (2006) report that respondents have strong feelings about how their words or their personal characteristics are altered in research reports. (n.d.). The https:// ensures that you are connecting to the It is important for participants to understand the research goals and methods, and investigators must be sensitive to the local culture. For example, any hard-copies of notebooks, questionnaires, surveys and other paper documentation should be kept in a secure location, where there is no public access. The emphasis on protection from harm is consistent with The Belmont Reports emphasis on beneficenceresearchers must not harm their study participants. (3) National Institutes of Health. Deductive disclosure, also known as internal confidentiality (Tolich, 2004), occurs when the traits of individuals or groups make them identifiable in research reports (Sieber, 1992).
Their study participants were not given a role in resolving confidentiality dilemmas. It is the Principal Investigators responsibility to make sure that every member of the research team is fully trained and educated on the importance of data protection and confidentiality, as well as the procedures and protocols related to private information. (7) This process is a basic legal and ethical standard by which all research must abide. STORE PAPER FORMS SECURELY: Much like electronic data, paper documents such as consent forms, printouts, or case tracking sheets that contain personal identifying information (PII) must be stored securely in locked file cabinets when not in use and must be handled only by trained staff members when actively used during research. However, unlike changing a specific name, changing additional details to render data unidentifiable can alter or destroy the original meaning of the data. Inevitably, the researcher takes responsibility for deciding what aspects of a persons stories or life circumstances need to be changed to maintain confidentiality (Parry & Mauthner, 2004; Wiles et al., 2008). The sociologists largely followed the dominant approach, assuming that respondents want confidentiality and taking responsibility to edit the data to ensure confidentiality. Accessibility Although these guidelines seem like common sense, there are several potential issues to informed consent that researchers must be especially concerned about when doing work in developing countries. In this article, I argue for addressing deductive disclosure through considerations of the audience of ones research and through a re-envisioned informed consent process. Moreover, researchers who know that respondents will see their work might alter their descriptions of the people and social setting (Hopkins, 1994), which raises questions about the validity of research. A. However, investigators did not account for educational and cultural contexts that reduced the efficacy of the informed consent. confidentiality privacy research health cambridge bioethics isbn law access They kept encouraging me to, and they still send me a newsletter every month, but I just didnt know how I would fit in with the other women. When asked why she felt she would not fit in she explained. The This may be especially true if the healthcare practitioners have been trained in Western countries. Privacy refers to persons and to their interest in controlling the access of others to themselves, and no participant should ever be forced to reveal information to the researcher that the participant does not wish to reveal. 0 This may require implementing educational interventions before consent or developing methods for determining an individuals comprehension of the study objectives.(15). Parry O, Mauthner N. Whose data are they anyway? They should never be shared or left on slips of paper at work stations or desks. Weighing potential audiences also leads to a consideration of priorities. health protecting privacy research services isbn data As an alternative to altering key details in data, researchers leave data unpublished because of fears that publication will lead to deductive disclosure (Wiles et al., 2008). research privacy confidentiality limited data foundation issues ethics research privacy confidentiality ethical anonymity harm maintaining psychological confidential legal study physical risks jeopardy abuse lesson education kept resume Lawton J. By assuming all study participants want complete confidentiality researchers risk becoming paternalistic and denying participants their voice and the freedom to choose how their data is handled (Giordano et al., 2007; Ryen, 2004). Rachels comments presented me with an ethical dilemmawhat should I do with this information? Gaining and maintaining consent: Ethical concerns raised in a study of dying patients. In her tests, the Scrub program identified 100% of personal identifiers. My dissertation did not address the experiences of sexual minority women. In this article I provide practical suggestions for balancing rich data with the need to protect respondent confidentiality. In many cases, researchers will produce various types of reports or papers for publication, as well as a de-identified data file for use by other researchers or the general public. Most of the study participants described the devastation of their diagnoses and the harsh physical effects of cancer treatment, but Rachels story was sadder than the others.
Making assurances of confidentiality (or knowing that you cannot promise confidentiality) is easier when the intended use of the data is clear and specific. The Department of Energy committee that made recommendations on appropriate compensation for improper human radiation experiments conducted during the Cold War pulled together data collected as far back as the 1950s. Rachels disclosure of her sexuality and her discomfort with the idea of attending the support group is an example of an ethically important moment (Guillemin & Gillam, 2004). confidentiality patient medical clipart nursing healthcare health doctor research practice clip records care nurse bmj disclosing cliparts papers papermasters These challenges are not adequately addressed in the literature on research ethics and research methods. Mailing Address: Box 800392,Charlottesville, VA 22908. Guillemin and Gillam define ethically important moments as those occurrences, which are often seemingly routine, that cause researchers to make decisions that have ethical implications (see also Goodwin et al., 2003). U.S. Department of Health and Human Services confidentiality dataset
As a result, I constructed an alternative approach to handling qualitative data, which I summarize below. If I spoke with physicians and nurses in the hospital about the experiences of a lesbian patient, they would likely associate these findings with Rachel via deductive disclosure, even if I changed her name. Like Goodwin and her colleagues (2003), I found the process of trying to decide what was right and delving into different possible scenarios unsettling. Research involving information about illegal behaviors may require a federalCertificate of Confidentiality, which protects against disclosure to law enforcement agencies and prevents records from being subpoenaed. Readers are typically unaware of how data has been altered and therefore unable to consider the significance of changes for their interpretations of the data or for the validity of the data (Wiles et al., 2008). As a new researcher, I was grateful to be granted access to patients. may or may not have to be collected. In this article, well talk about the implications of confidentiality in research, and how to protect privacy and confidentiality in research. If your research plan calls for destruction of documents or electronic files after the project has been completed, all paper files or CDs with PII should be shredded and any electronic files on memory drives, PCs, laptops and file serves should be permanently deleted. In general, regulation requires that all raw data be kept for a minimum of 3-years after study completion. Second, under the dominant approach, researchers carry the burden of deciding which data could identify a respondent and deciding how to alter the data. compliance privacy security gvu Nevertheless, it is important to have a clear retention policy that balances the best interests of society with those of the research institution and the individual researcher. Using an example from a study of breast cancer survivors, I argue that by carefully considering the audience for ones research and by re-envisioning the informed consent process, qualitative researchers can avoid confidentiality dilemmas that might otherwise lead them not to report rich, detailed data. Giordano J, OReilly M, Taylor H, Dogra N. Confidentiality and autonomy: The challenge(s) of offering research participants a choice of disclosing their identity. Many of the weaknesses of the dominant approach to confidentiality can be avoided via a re-envisioned informed consent process. And because subjects may not be identified by names alone, but by other identifiers or by combinations of information about subjects, researchers will oftenonly report aggregate findings,notindividual-level data, to the public. PROTECT PASSWORDS: Secure data storage depends on the creation and use of passwords that are needed to gain access to data records. Potential participants must also be given adequate time to ask questions of the researcher, receive clear answers, and reflect on this information before choosing to participate. However, qualitative data sets will likely contain references to specific places and persons that are difficult to capture because they vary across respondents and occur randomly throughout transcripts or notes. Finally, the dominant approach to confidentiality assumes that details in our data can be changed to protect our respondents without compromising the meaning of the data. Code of Federal Regulations, title 45, part 46, protection of human subjects. How to Find the Right Journal for my Paper? Ethical code has evolved over time, and changes are often spurred by media attention following an unethical experiment. Introducing a post-interview confidentiality form entails additional work for the researcher. No details need to be changed and you may use my real name when using my data in publications or presentations. and transmitted securely. This material is based upon work supported by the National Science Foundation under Grant No.
Their study participants were not given a role in resolving confidentiality dilemmas. It is the Principal Investigators responsibility to make sure that every member of the research team is fully trained and educated on the importance of data protection and confidentiality, as well as the procedures and protocols related to private information. (7) This process is a basic legal and ethical standard by which all research must abide. STORE PAPER FORMS SECURELY: Much like electronic data, paper documents such as consent forms, printouts, or case tracking sheets that contain personal identifying information (PII) must be stored securely in locked file cabinets when not in use and must be handled only by trained staff members when actively used during research. However, unlike changing a specific name, changing additional details to render data unidentifiable can alter or destroy the original meaning of the data. Inevitably, the researcher takes responsibility for deciding what aspects of a persons stories or life circumstances need to be changed to maintain confidentiality (Parry & Mauthner, 2004; Wiles et al., 2008). The sociologists largely followed the dominant approach, assuming that respondents want confidentiality and taking responsibility to edit the data to ensure confidentiality. Accessibility Although these guidelines seem like common sense, there are several potential issues to informed consent that researchers must be especially concerned about when doing work in developing countries. In this article, I argue for addressing deductive disclosure through considerations of the audience of ones research and through a re-envisioned informed consent process. Moreover, researchers who know that respondents will see their work might alter their descriptions of the people and social setting (Hopkins, 1994), which raises questions about the validity of research. A. However, investigators did not account for educational and cultural contexts that reduced the efficacy of the informed consent. confidentiality privacy research health cambridge bioethics isbn law access They kept encouraging me to, and they still send me a newsletter every month, but I just didnt know how I would fit in with the other women. When asked why she felt she would not fit in she explained. The This may be especially true if the healthcare practitioners have been trained in Western countries. Privacy refers to persons and to their interest in controlling the access of others to themselves, and no participant should ever be forced to reveal information to the researcher that the participant does not wish to reveal. 0 This may require implementing educational interventions before consent or developing methods for determining an individuals comprehension of the study objectives.(15). Parry O, Mauthner N. Whose data are they anyway? They should never be shared or left on slips of paper at work stations or desks. Weighing potential audiences also leads to a consideration of priorities. health protecting privacy research services isbn data As an alternative to altering key details in data, researchers leave data unpublished because of fears that publication will lead to deductive disclosure (Wiles et al., 2008). research privacy confidentiality limited data foundation issues ethics research privacy confidentiality ethical anonymity harm maintaining psychological confidential legal study physical risks jeopardy abuse lesson education kept resume Lawton J. By assuming all study participants want complete confidentiality researchers risk becoming paternalistic and denying participants their voice and the freedom to choose how their data is handled (Giordano et al., 2007; Ryen, 2004). Rachels comments presented me with an ethical dilemmawhat should I do with this information? Gaining and maintaining consent: Ethical concerns raised in a study of dying patients. In her tests, the Scrub program identified 100% of personal identifiers. My dissertation did not address the experiences of sexual minority women. In this article I provide practical suggestions for balancing rich data with the need to protect respondent confidentiality. In many cases, researchers will produce various types of reports or papers for publication, as well as a de-identified data file for use by other researchers or the general public. Most of the study participants described the devastation of their diagnoses and the harsh physical effects of cancer treatment, but Rachels story was sadder than the others.
Making assurances of confidentiality (or knowing that you cannot promise confidentiality) is easier when the intended use of the data is clear and specific. The Department of Energy committee that made recommendations on appropriate compensation for improper human radiation experiments conducted during the Cold War pulled together data collected as far back as the 1950s. Rachels disclosure of her sexuality and her discomfort with the idea of attending the support group is an example of an ethically important moment (Guillemin & Gillam, 2004). confidentiality patient medical clipart nursing healthcare health doctor research practice clip records care nurse bmj disclosing cliparts papers papermasters These challenges are not adequately addressed in the literature on research ethics and research methods. Mailing Address: Box 800392,Charlottesville, VA 22908. Guillemin and Gillam define ethically important moments as those occurrences, which are often seemingly routine, that cause researchers to make decisions that have ethical implications (see also Goodwin et al., 2003). U.S. Department of Health and Human Services confidentiality dataset 
As a result, I constructed an alternative approach to handling qualitative data, which I summarize below. If I spoke with physicians and nurses in the hospital about the experiences of a lesbian patient, they would likely associate these findings with Rachel via deductive disclosure, even if I changed her name. Like Goodwin and her colleagues (2003), I found the process of trying to decide what was right and delving into different possible scenarios unsettling. Research involving information about illegal behaviors may require a federalCertificate of Confidentiality, which protects against disclosure to law enforcement agencies and prevents records from being subpoenaed. Readers are typically unaware of how data has been altered and therefore unable to consider the significance of changes for their interpretations of the data or for the validity of the data (Wiles et al., 2008). As a new researcher, I was grateful to be granted access to patients. may or may not have to be collected. In this article, well talk about the implications of confidentiality in research, and how to protect privacy and confidentiality in research. If your research plan calls for destruction of documents or electronic files after the project has been completed, all paper files or CDs with PII should be shredded and any electronic files on memory drives, PCs, laptops and file serves should be permanently deleted. In general, regulation requires that all raw data be kept for a minimum of 3-years after study completion. Second, under the dominant approach, researchers carry the burden of deciding which data could identify a respondent and deciding how to alter the data. compliance privacy security gvu Nevertheless, it is important to have a clear retention policy that balances the best interests of society with those of the research institution and the individual researcher. Using an example from a study of breast cancer survivors, I argue that by carefully considering the audience for ones research and by re-envisioning the informed consent process, qualitative researchers can avoid confidentiality dilemmas that might otherwise lead them not to report rich, detailed data. Giordano J, OReilly M, Taylor H, Dogra N. Confidentiality and autonomy: The challenge(s) of offering research participants a choice of disclosing their identity. Many of the weaknesses of the dominant approach to confidentiality can be avoided via a re-envisioned informed consent process. And because subjects may not be identified by names alone, but by other identifiers or by combinations of information about subjects, researchers will oftenonly report aggregate findings,notindividual-level data, to the public. PROTECT PASSWORDS: Secure data storage depends on the creation and use of passwords that are needed to gain access to data records. Potential participants must also be given adequate time to ask questions of the researcher, receive clear answers, and reflect on this information before choosing to participate. However, qualitative data sets will likely contain references to specific places and persons that are difficult to capture because they vary across respondents and occur randomly throughout transcripts or notes. Finally, the dominant approach to confidentiality assumes that details in our data can be changed to protect our respondents without compromising the meaning of the data. Code of Federal Regulations, title 45, part 46, protection of human subjects. How to Find the Right Journal for my Paper? Ethical code has evolved over time, and changes are often spurred by media attention following an unethical experiment. Introducing a post-interview confidentiality form entails additional work for the researcher. No details need to be changed and you may use my real name when using my data in publications or presentations. and transmitted securely. This material is based upon work supported by the National Science Foundation under Grant No.
