Oftentimes, this means a fundamental reconsideration of what qualifies as genuine consent given the cultural context. confidentiality privacy research health cambridge bioethics isbn law access Especially in medical research, researchers are in a position of responsibility and dealing with a great deal of very personal information that their participants have agreed to disclose. In fact, early in the development of the project, the Edgewater Center director asked me if I would be willing to present my findings to the doctors and nurses who worked with the breast cancer patients. Wiles R, Charles V, Crow G, Heath S. Researching researchers: lessons for research ethics. ORI Awards Three Research Integrity Grants. I had enough stress on me, I didnt need to be trying to explain to people why I live the way I live. What can the participant expect during the study, and what does their participation entail? What are the reasonably foreseeable risks? Corden A, Sainsbury R. Exploring quality: Research participants perspectives on verbatim quotations. Thus, it is not surprising that researchers perceive maintaining confidentiality as challenging and as an area of great uncertainty (Wiles et al., 2008). confidentiality patient medical clipart nursing healthcare health doctor research practice clip records care nurse bmj disclosing cliparts papers papermasters As an additional challenge, stating our specific plans for the data might influence what respondents say or how they behave (Crow et al., 2006; Morse, 2008). In general, regulation requires that all raw data be kept for a minimum of 3-years after study completion. hbbd```b``v 3A$da`Y0d"Yq0yr6;^f"s@]3dR%f10120mg`$ _bF
The use of user groups simplifies the granting and revoking of access to a research projects electronic data resources. Confidentiality in qualitative research: Reflections on secrets, power and agency. Please seeCertificate of Confidentialityfor more information. Knowing that the respondent is aware of the possibility of follow-up discussions about confidentiality makes re-contacting respondents for this purpose less daunting. 
No details need to be changed and you may use my real name when using my data in publications or presentations. I would like to thank Elizabeth Armstrong and the participants of the 2005 National Science Foundation Ethics Workshop in Bloomington, IN, USA for their helpful contributions to this paper. Thus, in health research, speaking with respondents specifically about how data will be shared with physicians is especially important. If your institution does not have built-in systems to assure confidentiality and data protection in research, you may want to consider a third party. She put me in touch with the center director and within days we met to discuss my study. The reflexive nature of qualitative research, its use of unexpected ideas that arise through data collection and its focus upon respondents meanings and interpretations renders the commitment to informing respondents of the exact path of the research unrealistic. (Parry & Mauthner, 2004, p. 146; see also Merrel & Williams, 1994) Nonetheless, most outlets for research can be anticipated. Data Management Practices. 
While secure storage media will protect data when it is not being analyzed, it is also important to follow practices that keep data secure while it is being analyzed. Planning ethically responsible research: A guide for students and internal review boards. (1979). Fourth, although assurances of confidentiality function to build trust with respondents, the promise of confidentiality might prevent the researcher from using the rich data received when respondents open up to the researcher. 
I conducted four pilot interviews with breast cancer survivors. Jay MacLeod attempted to share his book, Aint No Making It (1995), with the some of the young men who were the focus of his ethnography; however, the young men showed little interest in reading his book or discussing it with him. If you would like to submit a concern anonymously please call theUniversity's Compliance Helpline. Third, researchers can stress that using an additional confidentiality form, such as the example shown in Appendix A, increases ethical compliance by giving respondents greater voice, in essence treating them as autonomous agents in accordance with the Belmont reports guidelines requiring respect for persons. Any changes in the doctors behavior would likely benefit Rachel; for example, they might provide her with additional support. It is questionable whether researchers from developed countries are well prepared for the enormous responsibility that this attitude of respect and trust places upon them.(5). (1), Today, the Belmont Report is arguably the paramount code of ethics, used by the regulating agencies of many U.S. Fourth, researchers can emphasize that using a post-interview confidentiality form for studies of sensitive topics ensures that respondents have an opportunity to express their views of data use and are comfortable with the confidentiality agreement (Carter et al., 2008). Introducing a post-interview confidentiality form entails additional work for the researcher. It is important for researchers to understand how to conduct their research in a manner that honors this trust, both for the sake of their research participants and for the sake of their studys validity. Rachel, the sixteenth woman I interviewed, was among those recruited from the Edgewater Center.
Code of ethics of the American Anthropological Association. What will be compensation for injuries should any occur during the study? How long is reasonable will vary from field to field and institution to institution. aro
One such dilemma involves the conflict between conveying detailed, accurate accounts of the social world while simultaneously protecting the identities of the individuals who live in that particular social world. Again, different study populations will be more or less suited for a post-interview confidentiality discussion. The dominant approach has several weaknesses. Learn more confidentiality dataset 2009 Nov; 19(11): 16321641. (3) National Institutes of Health. Hopkins (1993) creates entirely new characters and scenes that are a composite of many people and events she witnessed in her fieldwork but which represent no single person. What are advantageous alternatives to participating? As Giordano and colleagues (2007) note, when respondents opt to be identified in research, they need to be made aware that the final presentation of their views may not be entirely what they envisioned and once something is in print it cannot be changed. For example, if a researcher studying teachers named the school district where the research occurred, someone with knowledge of the school district could likely identify individual teachers based on traits such as age, gender, and number of years with the school district (Sieber, 1992). Be careful not to publish enough information that the participant can be identified. She decided to be open about her sexuality with her physicians because she wanted her partner with her at medical appointments. Communication about audience can be verbal, as it largely is in anthropology, or part of an informed consent document. That doesnt even take into consideration the cost to the human subjects themselves. The alternative approach is consistent with the Belmont Reports emphasis on beneficence and respect for persons and represents ethical research practices. But this approach does little to ensure that persons with whom respondents have relationships such as spouses, co-workers, or neighbors will be unable to identify respondents. In interview studies, use the participants first name only (or even using an alias) when recording or publishing data. 8600 Rockville Pike (7) This process is a basic legal and ethical standard by which all research must abide. Helping you publish your research is our job. 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. But now, its more and more challenging to maintain confidentiality and data protection in research. Guidelines for the conduct of research involving human subjects at the National Institutes of Health. A more nuanced view of consent means moving away from the assumption that every respondent desires complete confidentiality and instead recognizing that a research participant might want to receive recognition for some or all of what he or she contributes.
For example, in a study of work-family policies, removing or altering details of employer size, industry, policies, and family structure might protect individual and employer identities, but these change make the data useless for addressing the research questions at hand (McKee et al., 2000; Parry & Mauthner, 2004). Addresses can be deleted from the file once they are no longer needed. Losing the insights of a small number of respondents or even of one respondent may be particularly consequential for researchers seeking to impact clinical practice as the experiences of one or two patients can hold key insights for improving clinic care (Karnieli-Miller et al., 2009). Depending on the type of study, personal identifiers such as names, birthdates, places of residence etc. Sweeney (1996) showed that using find and replace only captured 3060% of personally-identifying information in medical records. In: Seale C, Gobo G, Gubrium JF, Silverman D, editors. According to Family Health International, Informed consent is not merely a legal requirement or a document to be signed;it is a communication process between the researcher and the participantthat starts before the research is initiated and continues throughout the study. organizations. The burden of responsibility isalways on the researcherto make sure that his or her participants are fully informed and therefore may freely choose to participate in the study. railway strategies ibs Careers, Karen Kaiser, Ph.D., Institute for Health Research and Policy, 1747 West Roosevelt Road, Room 558 (MC275), Chicago, IL 60608, The publisher's final edited version of this article is available at. Moreover, anticipating ones audience challenges the inductive framework of qualitative research (Morse, 2008). However, I had promised Rachel confidentiality. (2) The report highlights three main guidelines for human research: respect for persons, beneficence, and justice. (8)Research Ethics Training Curriculum: Responsible Conduct of Research: Informed Consent as a Process. Family Health International. ___ You may share the information just as I provided it; however, please do not use my real name. 82, No. For example, the United States Code of Federal Regulations (Department of Health and Human Services, 2005) section on the protection of human subjects simply states that researchers and review boards must ensure adequate provisions to protect respondent privacy and maintain confidentiality. Each member of the workshop wrote an ethics case. Carter S, Jordens C, McGrath C, Little M. You have to make something of all that rubbish, do you? will also be available for a limited time. Understanding confidentiality and Anonymity. Considering ones audience is a first step in improving dialogue with respondents about data use and confidentiality. 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. Researchers must present to their research participants the possible impacts of the choices, and make clear that despite their best efforts, anonymity may be compromised or recognition fail to materialize. Check more about the Team Structure and Responsibilities. When a new disease emerges, such as AIDS, researchers use stored samples/data to pinpoint first occurrences and the likely course of development of the disease. I was overjoyed when the center director agreed to help me recruit women from their database of patients. After interviewing Rachel I began to think about the limitations of the dominant approach. data privacy sketchbubble ppt powerpoint presentation Thus, the approach dissuades researchers from having ongoing discussions with respondents about the use of their data and assumes all respondents want complete confidentiality.
The key feature of the document is that it is considers confidentiality in light of the actual data that has been collected. What are the rights of confidentiality and privacy? Names and other personal information can be coded, with the encoding key kept in a separate and secure location. While traditional methods of obtaining consent use a standard written form (tailored to the specific experiment) to record a participants signature, in many low-resource settings, investigators are faced with poor literacy levels and various cultural factors that prevent the use of this method. As described in the Belmont Report, informed consent allows for the confirmation of autonomy among all research participants. Weiss (1994) is unequivocal on the issue of confidentiality: Nothing reported from the study, in print or in lecture, should permit identification of respondents. (p. 131) However, Weiss also notes our responsibility to make the most useful report possible It is our responsibility to make (our respondents) lessons known. (p. 131) If I changed her identifying characteristic (lesbian), I would not be able to convey her lessons about being a lesbian woman with breast cancer.
rule research privacy hipaa slide data nih presentation ppt limited use Tolich M. Internal confidentiality: When confidentiality assurances fail relational informants. Foremost, they keep their records secure through the use of password protected files, encryption when sending information over the internet, and even old-fashioned locked doors and drawers. Between privacy and confidentiality, confidentiality is arguably the more important one in research. The first approach, which I refer to as the dominant approach, is commonly used in sociology and centers on making respondents unidentifiable. This is the approach that guided my dissertation research. The terms anonymity and confidentiality are frequently confused in human subjects research. The hospital affiliated with the Edgewater Center diagnoses approximately 150 breast cancer patients a year. 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. Vol. Proceedings, Journal of the American Medical Informatics Association. However, qualitative researchers face unique, and often ambiguous, ethical dilemmas in disseminating this rich data. Most of the time, an alias will suffice, and is especially important to protect the participant if the published data includes other identifiers such as age, gender, community affiliations, or place of residence. When you are conducting research on human beings, whether its clinical trials or psychological inquiries, the importance of privacy and confidentiality cannot be understated. As sociologists, we lack standard practices for using respondent input. Using random codes to identify individual subjects, rather than names or social security numbers, can also further protect private information. It is always the responsibility of the researcher to adapt his or her methodologies to fit the cultural context in which the study is taking place. Grinyer A. ___ You may contact me if you have any questions about sharing my data with others. Researchers also cannot predict when someone will challenge their work and ask to see the original data. You should make certain that all members of the study team have beentrainedin these issues and understand not to discuss participants outside of the research context. 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). compliance privacy security gvu The Nuffield Council on Bioethics emphasizes this position in their report on research ethics in developing countries: Researchers from developed countries may not be fully aware of prospective participants considerable trust in and respect for medical doctors and other healthcare practitioners, even those with modest qualifications. Beck C. Benefits of participating in internet interviews: Women helping women. An outside information technology organization, or a team member specifically tasked to ensure data protection, might be a good idea. Gaining and maintaining consent: Ethical concerns raised in a study of dying patients. In this study, investigators performed qualitative and quantitative research regarding the incidence of low birth weight, and reasons for not weighing a child at birth. Karnieli-Miller O, Strier R, Pessach L. Power relations in qualitative research. In practice, the approach may need to be modified. Because most human subjects research requires signed documentation of consent, subject anonymity is not as common in human subjects research. I begin with an example from my own research on breast cancer survivors to illustrate the confidentiality dilemmas faced by qualitative researchers. privacy flyer data guidelines reference card oblong means For example, a breach of confidentiality may be required in cases ofsuspected abuseor if the participant is inimminent risk of harm to selfor others. Princeton Universitys OIT is an excellent resource for information on, RESTRICTED USE SHARED ACCOUNTS OR GROUP LOGIN IDs. 5, 2.
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. privacy and provide for adequate informed consent. The Principal Investigator should limit access to this information to the fewest individuals possible, including which research team members are authorized to manage and access any data. Physical Address:One Morton Dr. Suite 500 _ #KH+ ai All information gathered in a research study should be considered information that an individual has disclosed in a relationship of trust, and participants have the right to expect that it will not be divulged without their permission. computing edge security data architecture research paradigm preserving survey issues privacy open Like Goodwin and her colleagues (2003), I found the process of trying to decide what was right and delving into different possible scenarios unsettling. It seems reasonable that sharing this information would not cause physicians to alter Rachels care. (9)Research Ethics Training Curriculum: Responsible Conduct of Research: Essential Elements of Informed Consent. Family Health International. Qual Health Res. Because the alternative approach gives the respondent a more active role, it may work best in longer research relationships where respondents feel comfortable with the researcher (Carter et al., 2008). If you have questions, concerns, suggestions about research, a research-related injury or questions about the rights of a research participant, you may contact the Office of the Vice President for Research (VPR) at vpresearch@virginia.edu. It is the researchers responsibility to describe, in detail, all associated risks and benefits of the research to avoid miscommunication between the review board and the investigator. The Nuremberg Code, for instance, states that participation in research and experiments must be voluntary. Relationships in the community were strained because of what Ellis had written and the members of the community felt betrayed and humiliated by Ellis (Ellis, 1995). What are my goals? Ethics and ethnography: An experiential account. Given this small patient pool, Rachel might be the only openly lesbian breast cancer patient seen at the hospital during that time. Although this is not necessarily a standardized methodology for obtaining consent, it helped to ensure that participation was voluntary. There are several benefits to the alternative approach I have outlined. The alternative approach addresses the shortcomings of the dominant approach by 1) making respondents better informed of the use of data (i.e., who is the audience for the study results and how will the study results be disseminated), and 2) by instituting practical steps to facilitate dialogue with respondents about how their data can be used (i.e., revising the informed consent process). In: Brettell C, editor. USE EFFECTIVE METHODS OF DATA DESTRUCTION: When requesting IRB review for their planned studies, researchers must create a plan for the ultimate disposition of their research data. The distinction between the two terms, however, is critical in the design of protocols that protect participantprivacy and provide for adequate informed consent. ), Understanding Confidentiality and Anonymity. If there is no connection between the participant and their data, even the most sensitive studies can qualify for exemption assuming they are minimally risky. Informed consent, usually in the form of a document signed by the subject, relays all pertinent and relevant research information, such as risks and benefits, to the potential subject, allowing him or her to make an informed decision regarding participation. In contrast, anthropologists commonly share their research findings with study participants and solicit their feedback. Also look into different protections that are often featured within database programs themselves. Postdoctoral Fellow in the National Cancer Institutes Cancer Education and Career Development Program at the University of Illinois at Chicago Cancer Center in Chicago, IL, USA; breast cancer, confidentiality, participant, interviews, qualitative methods, general, research, design, research, dissemination and utilization. I also visited the Edgewater Cancer Center, a patient support center in a small city where local physicians refer patients for free emotional support and access to a library of cancer information. In the research time, the Principal Investigator is ultimately responsible for the integrity of the stored data. Most human subjects research requires the collection of a signed consent agreement from participants, and the collection of other personally identifiable data, and thus researchers are aware of the identity of their subjects.
No details need to be changed and you may use my real name when using my data in publications or presentations. I would like to thank Elizabeth Armstrong and the participants of the 2005 National Science Foundation Ethics Workshop in Bloomington, IN, USA for their helpful contributions to this paper. Thus, in health research, speaking with respondents specifically about how data will be shared with physicians is especially important. If your institution does not have built-in systems to assure confidentiality and data protection in research, you may want to consider a third party. She put me in touch with the center director and within days we met to discuss my study. The reflexive nature of qualitative research, its use of unexpected ideas that arise through data collection and its focus upon respondents meanings and interpretations renders the commitment to informing respondents of the exact path of the research unrealistic. (Parry & Mauthner, 2004, p. 146; see also Merrel & Williams, 1994) Nonetheless, most outlets for research can be anticipated. Data Management Practices. 
While secure storage media will protect data when it is not being analyzed, it is also important to follow practices that keep data secure while it is being analyzed. Planning ethically responsible research: A guide for students and internal review boards. (1979). Fourth, although assurances of confidentiality function to build trust with respondents, the promise of confidentiality might prevent the researcher from using the rich data received when respondents open up to the researcher. I conducted four pilot interviews with breast cancer survivors. Jay MacLeod attempted to share his book, Aint No Making It (1995), with the some of the young men who were the focus of his ethnography; however, the young men showed little interest in reading his book or discussing it with him. If you would like to submit a concern anonymously please call theUniversity's Compliance Helpline. Third, researchers can stress that using an additional confidentiality form, such as the example shown in Appendix A, increases ethical compliance by giving respondents greater voice, in essence treating them as autonomous agents in accordance with the Belmont reports guidelines requiring respect for persons. Any changes in the doctors behavior would likely benefit Rachel; for example, they might provide her with additional support. It is questionable whether researchers from developed countries are well prepared for the enormous responsibility that this attitude of respect and trust places upon them.(5). (1), Today, the Belmont Report is arguably the paramount code of ethics, used by the regulating agencies of many U.S. Fourth, researchers can emphasize that using a post-interview confidentiality form for studies of sensitive topics ensures that respondents have an opportunity to express their views of data use and are comfortable with the confidentiality agreement (Carter et al., 2008). Introducing a post-interview confidentiality form entails additional work for the researcher. It is important for researchers to understand how to conduct their research in a manner that honors this trust, both for the sake of their research participants and for the sake of their studys validity. Rachel, the sixteenth woman I interviewed, was among those recruited from the Edgewater Center. Code of ethics of the American Anthropological Association. What will be compensation for injuries should any occur during the study? How long is reasonable will vary from field to field and institution to institution. aro
One such dilemma involves the conflict between conveying detailed, accurate accounts of the social world while simultaneously protecting the identities of the individuals who live in that particular social world. Again, different study populations will be more or less suited for a post-interview confidentiality discussion. The dominant approach has several weaknesses. Learn more confidentiality dataset 2009 Nov; 19(11): 16321641. (3) National Institutes of Health. Hopkins (1993) creates entirely new characters and scenes that are a composite of many people and events she witnessed in her fieldwork but which represent no single person. What are advantageous alternatives to participating? As Giordano and colleagues (2007) note, when respondents opt to be identified in research, they need to be made aware that the final presentation of their views may not be entirely what they envisioned and once something is in print it cannot be changed. For example, if a researcher studying teachers named the school district where the research occurred, someone with knowledge of the school district could likely identify individual teachers based on traits such as age, gender, and number of years with the school district (Sieber, 1992). Be careful not to publish enough information that the participant can be identified. She decided to be open about her sexuality with her physicians because she wanted her partner with her at medical appointments. Communication about audience can be verbal, as it largely is in anthropology, or part of an informed consent document. That doesnt even take into consideration the cost to the human subjects themselves. The alternative approach is consistent with the Belmont Reports emphasis on beneficence and respect for persons and represents ethical research practices. But this approach does little to ensure that persons with whom respondents have relationships such as spouses, co-workers, or neighbors will be unable to identify respondents. In interview studies, use the participants first name only (or even using an alias) when recording or publishing data. 8600 Rockville Pike (7) This process is a basic legal and ethical standard by which all research must abide. Helping you publish your research is our job. 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. But now, its more and more challenging to maintain confidentiality and data protection in research. Guidelines for the conduct of research involving human subjects at the National Institutes of Health. A more nuanced view of consent means moving away from the assumption that every respondent desires complete confidentiality and instead recognizing that a research participant might want to receive recognition for some or all of what he or she contributes.
For example, in a study of work-family policies, removing or altering details of employer size, industry, policies, and family structure might protect individual and employer identities, but these change make the data useless for addressing the research questions at hand (McKee et al., 2000; Parry & Mauthner, 2004). Addresses can be deleted from the file once they are no longer needed. Losing the insights of a small number of respondents or even of one respondent may be particularly consequential for researchers seeking to impact clinical practice as the experiences of one or two patients can hold key insights for improving clinic care (Karnieli-Miller et al., 2009). Depending on the type of study, personal identifiers such as names, birthdates, places of residence etc. Sweeney (1996) showed that using find and replace only captured 3060% of personally-identifying information in medical records. In: Seale C, Gobo G, Gubrium JF, Silverman D, editors. According to Family Health International, Informed consent is not merely a legal requirement or a document to be signed;it is a communication process between the researcher and the participantthat starts before the research is initiated and continues throughout the study. organizations. The burden of responsibility isalways on the researcherto make sure that his or her participants are fully informed and therefore may freely choose to participate in the study. railway strategies ibs Careers, Karen Kaiser, Ph.D., Institute for Health Research and Policy, 1747 West Roosevelt Road, Room 558 (MC275), Chicago, IL 60608, The publisher's final edited version of this article is available at. Moreover, anticipating ones audience challenges the inductive framework of qualitative research (Morse, 2008). However, I had promised Rachel confidentiality. (2) The report highlights three main guidelines for human research: respect for persons, beneficence, and justice. (8)Research Ethics Training Curriculum: Responsible Conduct of Research: Informed Consent as a Process. Family Health International. ___ You may share the information just as I provided it; however, please do not use my real name. 82, No. For example, the United States Code of Federal Regulations (Department of Health and Human Services, 2005) section on the protection of human subjects simply states that researchers and review boards must ensure adequate provisions to protect respondent privacy and maintain confidentiality. Each member of the workshop wrote an ethics case. Carter S, Jordens C, McGrath C, Little M. You have to make something of all that rubbish, do you? will also be available for a limited time. Understanding confidentiality and Anonymity. Considering ones audience is a first step in improving dialogue with respondents about data use and confidentiality. 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. Researchers must present to their research participants the possible impacts of the choices, and make clear that despite their best efforts, anonymity may be compromised or recognition fail to materialize. Check more about the Team Structure and Responsibilities. When a new disease emerges, such as AIDS, researchers use stored samples/data to pinpoint first occurrences and the likely course of development of the disease. I was overjoyed when the center director agreed to help me recruit women from their database of patients. After interviewing Rachel I began to think about the limitations of the dominant approach. data privacy sketchbubble ppt powerpoint presentation Thus, the approach dissuades researchers from having ongoing discussions with respondents about the use of their data and assumes all respondents want complete confidentiality. 
The key feature of the document is that it is considers confidentiality in light of the actual data that has been collected. What are the rights of confidentiality and privacy? Names and other personal information can be coded, with the encoding key kept in a separate and secure location. While traditional methods of obtaining consent use a standard written form (tailored to the specific experiment) to record a participants signature, in many low-resource settings, investigators are faced with poor literacy levels and various cultural factors that prevent the use of this method. As described in the Belmont Report, informed consent allows for the confirmation of autonomy among all research participants. Weiss (1994) is unequivocal on the issue of confidentiality: Nothing reported from the study, in print or in lecture, should permit identification of respondents. (p. 131) However, Weiss also notes our responsibility to make the most useful report possible It is our responsibility to make (our respondents) lessons known. (p. 131) If I changed her identifying characteristic (lesbian), I would not be able to convey her lessons about being a lesbian woman with breast cancer.
rule research privacy hipaa slide data nih presentation ppt limited use Tolich M. Internal confidentiality: When confidentiality assurances fail relational informants. Foremost, they keep their records secure through the use of password protected files, encryption when sending information over the internet, and even old-fashioned locked doors and drawers. Between privacy and confidentiality, confidentiality is arguably the more important one in research. The first approach, which I refer to as the dominant approach, is commonly used in sociology and centers on making respondents unidentifiable. This is the approach that guided my dissertation research. The terms anonymity and confidentiality are frequently confused in human subjects research. The hospital affiliated with the Edgewater Center diagnoses approximately 150 breast cancer patients a year. 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. Vol. Proceedings, Journal of the American Medical Informatics Association. However, qualitative researchers face unique, and often ambiguous, ethical dilemmas in disseminating this rich data. Most of the time, an alias will suffice, and is especially important to protect the participant if the published data includes other identifiers such as age, gender, community affiliations, or place of residence. When you are conducting research on human beings, whether its clinical trials or psychological inquiries, the importance of privacy and confidentiality cannot be understated. As sociologists, we lack standard practices for using respondent input. Using random codes to identify individual subjects, rather than names or social security numbers, can also further protect private information. It is always the responsibility of the researcher to adapt his or her methodologies to fit the cultural context in which the study is taking place. Grinyer A. ___ You may contact me if you have any questions about sharing my data with others. Researchers also cannot predict when someone will challenge their work and ask to see the original data. You should make certain that all members of the study team have beentrainedin these issues and understand not to discuss participants outside of the research context. 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). compliance privacy security gvu The Nuffield Council on Bioethics emphasizes this position in their report on research ethics in developing countries: Researchers from developed countries may not be fully aware of prospective participants considerable trust in and respect for medical doctors and other healthcare practitioners, even those with modest qualifications. Beck C. Benefits of participating in internet interviews: Women helping women. An outside information technology organization, or a team member specifically tasked to ensure data protection, might be a good idea. Gaining and maintaining consent: Ethical concerns raised in a study of dying patients. In this study, investigators performed qualitative and quantitative research regarding the incidence of low birth weight, and reasons for not weighing a child at birth. Karnieli-Miller O, Strier R, Pessach L. Power relations in qualitative research. In practice, the approach may need to be modified. Because most human subjects research requires signed documentation of consent, subject anonymity is not as common in human subjects research. I begin with an example from my own research on breast cancer survivors to illustrate the confidentiality dilemmas faced by qualitative researchers. privacy flyer data guidelines reference card oblong means For example, a breach of confidentiality may be required in cases ofsuspected abuseor if the participant is inimminent risk of harm to selfor others. Princeton Universitys OIT is an excellent resource for information on, RESTRICTED USE SHARED ACCOUNTS OR GROUP LOGIN IDs. 5, 2.
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. privacy and provide for adequate informed consent. The Principal Investigator should limit access to this information to the fewest individuals possible, including which research team members are authorized to manage and access any data. Physical Address:One Morton Dr. Suite 500 _ #KH+ ai All information gathered in a research study should be considered information that an individual has disclosed in a relationship of trust, and participants have the right to expect that it will not be divulged without their permission. computing edge security data architecture research paradigm preserving survey issues privacy open Like Goodwin and her colleagues (2003), I found the process of trying to decide what was right and delving into different possible scenarios unsettling. It seems reasonable that sharing this information would not cause physicians to alter Rachels care. (9)Research Ethics Training Curriculum: Responsible Conduct of Research: Essential Elements of Informed Consent. Family Health International. Qual Health Res. Because the alternative approach gives the respondent a more active role, it may work best in longer research relationships where respondents feel comfortable with the researcher (Carter et al., 2008). If you have questions, concerns, suggestions about research, a research-related injury or questions about the rights of a research participant, you may contact the Office of the Vice President for Research (VPR) at vpresearch@virginia.edu. It is the researchers responsibility to describe, in detail, all associated risks and benefits of the research to avoid miscommunication between the review board and the investigator. The Nuremberg Code, for instance, states that participation in research and experiments must be voluntary. Relationships in the community were strained because of what Ellis had written and the members of the community felt betrayed and humiliated by Ellis (Ellis, 1995). What are my goals? Ethics and ethnography: An experiential account. Given this small patient pool, Rachel might be the only openly lesbian breast cancer patient seen at the hospital during that time. Although this is not necessarily a standardized methodology for obtaining consent, it helped to ensure that participation was voluntary. There are several benefits to the alternative approach I have outlined. The alternative approach addresses the shortcomings of the dominant approach by 1) making respondents better informed of the use of data (i.e., who is the audience for the study results and how will the study results be disseminated), and 2) by instituting practical steps to facilitate dialogue with respondents about how their data can be used (i.e., revising the informed consent process). In: Brettell C, editor. USE EFFECTIVE METHODS OF DATA DESTRUCTION: When requesting IRB review for their planned studies, researchers must create a plan for the ultimate disposition of their research data. The distinction between the two terms, however, is critical in the design of protocols that protect participantprivacy and provide for adequate informed consent. ), Understanding Confidentiality and Anonymity. If there is no connection between the participant and their data, even the most sensitive studies can qualify for exemption assuming they are minimally risky. Informed consent, usually in the form of a document signed by the subject, relays all pertinent and relevant research information, such as risks and benefits, to the potential subject, allowing him or her to make an informed decision regarding participation. In contrast, anthropologists commonly share their research findings with study participants and solicit their feedback. Also look into different protections that are often featured within database programs themselves. Postdoctoral Fellow in the National Cancer Institutes Cancer Education and Career Development Program at the University of Illinois at Chicago Cancer Center in Chicago, IL, USA; breast cancer, confidentiality, participant, interviews, qualitative methods, general, research, design, research, dissemination and utilization. I also visited the Edgewater Cancer Center, a patient support center in a small city where local physicians refer patients for free emotional support and access to a library of cancer information. In the research time, the Principal Investigator is ultimately responsible for the integrity of the stored data. Most human subjects research requires the collection of a signed consent agreement from participants, and the collection of other personally identifiable data, and thus researchers are aware of the identity of their subjects.
