In this article, well talk about the implications of confidentiality in research, and how to protect privacy and confidentiality in research. Not all studies can be anonymous. railway strategies 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. For a more exhaustive list of challenges and solutions to informed consent in developing countries, please clickhereto open the Nuffield Council on Bioethics report and refer to chapter 2, Consent, which begins on page 9. An empirical investigation of the social process of qualitative research. The code also states that Sociologists have an obligation to protect confidential information and must remove personal identifiers or employ other methods to mask individual identities. Helping you publish your research is our job. The emphasis on protection from harm is consistent with The Belmont Reports emphasis on beneficenceresearchers must not harm their study participants. (3) Last, the justice component of the report refers to considerations of vulnerable populations, and the benefits and findings of the research must be distributed equally.
Safeguarding this information is a key part of the relationship of trust and respect that exists between the researcher and the participant. Communication about audience can be verbal, as it largely is in anthropology, or part of an informed consent document. For more information about using data that are already collected, please see Secondary Use of Existing Data. Properly store and protect your data. But, I had not considered whether I wanted to impact the support services available to women with breast cancer. I realize that others might identify me based on the data, even though my name will not be used.
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. Please seeCertificate of Confidentialityfor more information. It is important to remember that our respondents constitute one potential audience. It is difficult to predict when data collected sometime in the past could be useful. 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. 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. McKee L, Mauthner N, Maclean C. Family friendly policies and practices in the oil and gas industry: Employers perspectives. privacy and provide for adequate informed consent. and transmitted securely. The method used to transfer files should reflect the sensitivity level of the data. It is important for participants to understand the research goals and methods, and investigators must be sensitive to the local culture. Ultimately, I chose not to share Rachels insights with the hospital staff or the staff at the Edgewater Center to protect her confidentiality; however, shelving data about a painful part of someones cancer experience was unsettling. 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. 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. 0 As Weiss (1994) notes, writing for more than one audience in any given piece is difficult. Rachels physicians were the first people she came out to as a lesbian. Given that qualitative studies often contain rich descriptions of study participants, confidentiality breaches via deductive disclosure are of particular concern to qualitative researchers. x1[i 812ghg|Ki ~)[S Y4I@bZp$3ZhO!|;a:Hs30> R| ! Again, different study populations will be more or less suited for a post-interview confidentiality discussion. Vulnerable populations such as minors or subordinates in the workplace might face negative consequences if their identities are revealed (Baez, 2002). However, with all populations, advising study participants up front about the time needed for the study and the format of the study will make such discussions easier. Informed consent- FAQs. What are advantageous alternatives to participating? What can the participant expect during the study, and what does their participation entail? A research study in Madhya Pradesh, India illustrates this particular challenge. Such documentationis most often waived for projects such as online surveythat present no more than minimal risk to subjects. Informed consent is required protection for the participant. endstream endobj 1276 0 obj <>/Metadata 103 0 R/Outlines 214 0 R/Pages 1267 0 R/StructTreeRoot 226 0 R/Type/Catalog>> endobj 1277 0 obj <. (3) National Institutes of Health. That doesnt even take into consideration the cost to the human subjects themselves.
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.
confidentiality privacy questions ask icon hhs gov Federal law does allow an IRB to waive the requirement for signed consent documents in cases where the collection of that document is the only identifying information linking the subject to the project. rule privacy hipaa research nih ppt Merrell J, Williams A.
(6) Subsequently, the participant is given the opportunity to withdraw from the research or experiment at any time and for any (or no) reason. It is also the option chosen by Goodwin and colleagues (2003) and by Baez (2002), who decided he could not report the specific examples of discrimination shared by minority faculty members for fear that they would be recognized by their peers and face negative consequences. (4) Zucker, D. (2007). Dyregrov K. Bereaved parents experience of research participation. Research that requires a Certificate of Confidentiality will also require additional information in the consent form. If, however, the data lead us towards different forms of dissemination, it may be necessary to re-contact participants to request permission to use their data in these unanticipated ways. (10) Bhutta, Z. Whatever the method used to protect private or confidential information, the researcher who collects or uses the information has the primary responsibility for its protection. 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. Some identifiers are easily recognized and dealt with. 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). Quality in Qualitative Research: Enhance Data to the Next Level, Writing a Scientific Research Project Proposal. Ethics in clinical research: A history of human subject protections and practical implementation of ethical standards. Even if paper copies of questionnaires, notes, etc., are stored in a safe, locked location, typically all of that information is also stored in some type of electronic database. Below, I discuss two approaches to handling rich qualitative data. However, as noted above, the payoff comes in having clearer input from the respondent on whether data can be published or shared with others. 
Sweeney created the Scrub program, which uses a complex set of algorithms to find and replace personal identifiers to cleanse medical records of personal information. In such cases,maintaining confidentiality is a key measure to ensure the protection of private information. Interested women were directed to call or email me for more information and to schedule an interview. Emergency Information (Includes alerts about delays and closures. 
The key feature of the document is that it is considers confidentiality in light of the actual data that has been collected. (11) Nuffield Council on Bioethics. The requirement of informed consent in writing does not go down very well in African societies that are still steeped in oral tradition unlike in European contexts where this is embraced and/or demanded.(13).
Researchers should develop culturally appropriate methods for obtaining informed consent. The alternative approach also gives researchers tools to for handling rich data and some of the more difficult aspects of confidentiality. about navigating our updated article layout. 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). Telephone: +1 (203) 404-4900Email: ufs@uniteforsight.org, Copyright 2000-2021 Unite For Sight, Inc. All Rights Reserved Worldwide.
Goodwin D, Pope C, Mort M, Smith A. Researchers also cannot predict when someone will challenge their work and ask to see the original data. Get publications, reminders, and invitations to special events. 10. However, sharing our conclusions with respondents can also enhance validity of our research by allowing respondents to comment on the accuracy of our data and interpretations (Maxwell, 1996). Do we acknowledge their suggestions and insights in our text? Lawton J. 405 0 obj <>stream But, some research suggests the opposite may occurrespondents may express a desire to publish data that researchers would have deemed too sensitive for publication. Care should be taken to reduce the risk of fire, flood, and other catastrophic events. Identifying ones primary audience can help focus analyses and writing. While the process of going through such community gatekeepers does not take away from the importance of the individual's understanding of and willingness to participate in the research, it adds an element of security in traditional societies where communal consciousness and living is the norm.(14). Department of Health and Human Services, 2005, American Anthropological Association, 1998, http://www.aaanet.org/committees/ethics/ethcode.htm, http://www.asanet.org/page.ww?section=Ethics&name=Code+of+Ethics+Table+of+Contents, http://www.hhs.gov/ohrp/humansubjects/guidance/45cfr46.htm, http://ohsr.od.nih.gov/guidelines/GrayBooklet82404.pdf. (16) Marshall, P.A. KEEP USER GROUP LISTS UP-TO-DATE: User groups are a convenient way to grant access to project files stored on a remote server. If the data are not properly protected, the investment, whether public or private, could become worthless. 2The names of my recruitment site, the staff at the site, and of all respondents and physicians are pseudonyms. When applicable, make sure any data is properly and completely destroyed. 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. Per the ASA Code of Ethics (1999), confidentiality should be addressed with research participants at the beginning of the research relationship. 395 0 obj <>/Filter/FlateDecode/ID[]/Index[374 32]/Info 373 0 R/Length 103/Prev 168502/Root 375 0 R/Size 406/Type/XRef/W[1 3 1]>>stream Bethesda, MD 20894, Web Policies The theoretical foundations of current confidentiality practices have been discussed elsewhere (Baez, 2002). An outside information technology organization, or a team member specifically tasked to ensure data protection, might be a good idea. confidentiality dataset Workshop on graduate research ethics education. Researchers also may need to consult with local community leaders before implementing a study. 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 interview studies, use the participants first name only (or even using an alias) when recording or publishing data. If so, details in the data will need to be modified.
_ #KH+ ai I sensed that Rachel still kept her sexuality a secret in many aspects of her life. Writing about refugees in the United States. The alternative approach that I propose draws insights from anthropology and emphasizes a greater consideration of the audience for ones research and a re-envisioned informed consent process. (6) U.S. Department of Health and Human Services. Cultural differences make up a large part of the potential difficulties to genuine informed consent, and researchers must be cognizant of the community structure in which they are conducting their research. ensor Breaches in confidentiality such as those in Fisher Folk also shatter the researcher-subject relationship and can damage the publics trust in researchers (Allen, 1997). 8600 Rockville Pike In general, access to information about individual participants should be restricted to the researcher, his or her advisor (if applicable), and any research assistants on a need-to-know basis. Because most human subjects research requires signed documentation of consent, subject anonymity is not as common in human subjects research. Hopkins M. Is anonymity possible? Although meticulous data cleaning can remove personal identifiers such as names, the contextual identifiers in individuals life stories will remain. This approach to confidentiality emphasizes a more nuanced consent process and takes into account the audiences of ones research. 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. data research privacy confidentiality issues ethics Therefore, its up to the entire research team to ensure that data, especially around the private information of human beings, is strongly protected. Informed Consent Form Templates. hb```d``g`a``heb@ !+sMGA!>@
,5(^`X\!jA2b;\6\flx WU"wVeF,
/57%ug+.l1^yU]hV[,]EU3KwvffqVX~/gYzki>n{ )QIA8!IAP`B@j@F\I PhJDD James T, Plazer H. Ethical considerations in qualitative research with vulnerable groups: Exploring lesbians and gay mens experiences of health careA personal perspective. Through qualitative research methods such as in-depth interviews and ethnography, researchers have the privilege of viewing our study participants lives and experiences in great detail. What I refer to as the dominant approach is, arguably, the most common approach to protecting respondent confidentiality in sociology. I first became aware of this disciplinary difference while participating in a National Science Foundation multi-discipline ethics workshop (National Science Foundation, 2005). 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). The answer, in some ways, is quite simple. Thus, it is not surprising that researchers perceive maintaining confidentiality as challenging and as an area of great uncertainty (Wiles et al., 2008). Page 774 (October 2004). A clean data set does not contain information that identifies respondents, such as a name or address (such identifying information might be stored elsewhere, in separate, protected files). The Belmont report.
They should never be shared or left on slips of paper at work stations or desks. Back up any and all electronic databases (on and offsite), and have hard and soft copies of every aspect of your data, analysis, etc. (15) Marshall, P. A. For example, the names of respondents can be replaced with pseudonyms. 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). Respondents with stigmatizing traits or behaviors, such as drug users, would be harmed if their identities were revealed in conjunction with reports of their undesirable behavior. In hindsight, Ellis (1995) acknowledged that the problems that followed the publication of Fisher Folk could have been prevented by approaching the respondents with the data she planned to publish, allowing them to know what would become of their data, and making them aware of how they would be portrayed in the final research. Qualitative research design: An interpretive approach. The anthropologists, in contrast, viewed confidentiality as the choice of their research participants. She replied, Im a private person and I couldnt bring myself to go to a support group. This can be done in the written consent form or verbally before, during or after data collection. The sociologists largely followed the dominant approach, assuming that respondents want confidentiality and taking responsibility to edit the data to ensure confidentiality. 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. 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. In the research time, the Principal Investigator is ultimately responsible for the integrity of the stored data. Grinyer A. Future work is needed to identify the substantive areas of research and the study populations best suited for the alternative approach. Input your search keywords and press Enter. 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. Ethical Challenges in Study Design and Informed Consent for Health Research in Resource-Poor SettingsSpecial Topics in Social, Economic and Behavioral ResearchNo. As such, qualitative researchers face a conflict between conveying detailed, accurate accounts of the social world and protecting the identities of the individuals who participated in their research. Also look into different protections that are often featured within database programs themselves. This specification came after Nazi physicians routinely performed involuntary experiments in which the subjects were forced into participation.
Safeguarding this information is a key part of the relationship of trust and respect that exists between the researcher and the participant. Communication about audience can be verbal, as it largely is in anthropology, or part of an informed consent document. For more information about using data that are already collected, please see Secondary Use of Existing Data. Properly store and protect your data. But, I had not considered whether I wanted to impact the support services available to women with breast cancer. I realize that others might identify me based on the data, even though my name will not be used.
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. Please seeCertificate of Confidentialityfor more information. It is important to remember that our respondents constitute one potential audience. It is difficult to predict when data collected sometime in the past could be useful. 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. 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. McKee L, Mauthner N, Maclean C. Family friendly policies and practices in the oil and gas industry: Employers perspectives. privacy and provide for adequate informed consent. and transmitted securely. The method used to transfer files should reflect the sensitivity level of the data. It is important for participants to understand the research goals and methods, and investigators must be sensitive to the local culture. Ultimately, I chose not to share Rachels insights with the hospital staff or the staff at the Edgewater Center to protect her confidentiality; however, shelving data about a painful part of someones cancer experience was unsettling. 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. 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. 0 As Weiss (1994) notes, writing for more than one audience in any given piece is difficult. Rachels physicians were the first people she came out to as a lesbian. Given that qualitative studies often contain rich descriptions of study participants, confidentiality breaches via deductive disclosure are of particular concern to qualitative researchers. x1[i 812ghg|Ki ~)[S Y4I@bZp$3ZhO!|;a:Hs30> R| ! Again, different study populations will be more or less suited for a post-interview confidentiality discussion. Vulnerable populations such as minors or subordinates in the workplace might face negative consequences if their identities are revealed (Baez, 2002). However, with all populations, advising study participants up front about the time needed for the study and the format of the study will make such discussions easier. Informed consent- FAQs. What are advantageous alternatives to participating? What can the participant expect during the study, and what does their participation entail? A research study in Madhya Pradesh, India illustrates this particular challenge. Such documentationis most often waived for projects such as online surveythat present no more than minimal risk to subjects. Informed consent is required protection for the participant. endstream endobj 1276 0 obj <>/Metadata 103 0 R/Outlines 214 0 R/Pages 1267 0 R/StructTreeRoot 226 0 R/Type/Catalog>> endobj 1277 0 obj <. (3) National Institutes of Health. That doesnt even take into consideration the cost to the human subjects themselves.
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.
confidentiality privacy questions ask icon hhs gov Federal law does allow an IRB to waive the requirement for signed consent documents in cases where the collection of that document is the only identifying information linking the subject to the project. rule privacy hipaa research nih ppt Merrell J, Williams A.
(6) Subsequently, the participant is given the opportunity to withdraw from the research or experiment at any time and for any (or no) reason. It is also the option chosen by Goodwin and colleagues (2003) and by Baez (2002), who decided he could not report the specific examples of discrimination shared by minority faculty members for fear that they would be recognized by their peers and face negative consequences. (4) Zucker, D. (2007). Dyregrov K. Bereaved parents experience of research participation. Research that requires a Certificate of Confidentiality will also require additional information in the consent form. If, however, the data lead us towards different forms of dissemination, it may be necessary to re-contact participants to request permission to use their data in these unanticipated ways. (10) Bhutta, Z. Whatever the method used to protect private or confidential information, the researcher who collects or uses the information has the primary responsibility for its protection. 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. Some identifiers are easily recognized and dealt with. 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). Quality in Qualitative Research: Enhance Data to the Next Level, Writing a Scientific Research Project Proposal. Ethics in clinical research: A history of human subject protections and practical implementation of ethical standards. Even if paper copies of questionnaires, notes, etc., are stored in a safe, locked location, typically all of that information is also stored in some type of electronic database. Below, I discuss two approaches to handling rich qualitative data. However, as noted above, the payoff comes in having clearer input from the respondent on whether data can be published or shared with others. Sweeney created the Scrub program, which uses a complex set of algorithms to find and replace personal identifiers to cleanse medical records of personal information. In such cases,maintaining confidentiality is a key measure to ensure the protection of private information. Interested women were directed to call or email me for more information and to schedule an interview. Emergency Information (Includes alerts about delays and closures. The key feature of the document is that it is considers confidentiality in light of the actual data that has been collected. (11) Nuffield Council on Bioethics. The requirement of informed consent in writing does not go down very well in African societies that are still steeped in oral tradition unlike in European contexts where this is embraced and/or demanded.(13). Researchers should develop culturally appropriate methods for obtaining informed consent. The alternative approach also gives researchers tools to for handling rich data and some of the more difficult aspects of confidentiality. about navigating our updated article layout. 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). Telephone: +1 (203) 404-4900Email: ufs@uniteforsight.org, Copyright 2000-2021 Unite For Sight, Inc. All Rights Reserved Worldwide.
Goodwin D, Pope C, Mort M, Smith A. Researchers also cannot predict when someone will challenge their work and ask to see the original data. Get publications, reminders, and invitations to special events. 10. However, sharing our conclusions with respondents can also enhance validity of our research by allowing respondents to comment on the accuracy of our data and interpretations (Maxwell, 1996). Do we acknowledge their suggestions and insights in our text? Lawton J. 405 0 obj <>stream But, some research suggests the opposite may occurrespondents may express a desire to publish data that researchers would have deemed too sensitive for publication. Care should be taken to reduce the risk of fire, flood, and other catastrophic events. Identifying ones primary audience can help focus analyses and writing. While the process of going through such community gatekeepers does not take away from the importance of the individual's understanding of and willingness to participate in the research, it adds an element of security in traditional societies where communal consciousness and living is the norm.(14). Department of Health and Human Services, 2005, American Anthropological Association, 1998, http://www.aaanet.org/committees/ethics/ethcode.htm, http://www.asanet.org/page.ww?section=Ethics&name=Code+of+Ethics+Table+of+Contents, http://www.hhs.gov/ohrp/humansubjects/guidance/45cfr46.htm, http://ohsr.od.nih.gov/guidelines/GrayBooklet82404.pdf. (16) Marshall, P.A. KEEP USER GROUP LISTS UP-TO-DATE: User groups are a convenient way to grant access to project files stored on a remote server. If the data are not properly protected, the investment, whether public or private, could become worthless. 2The names of my recruitment site, the staff at the site, and of all respondents and physicians are pseudonyms. When applicable, make sure any data is properly and completely destroyed. 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. Per the ASA Code of Ethics (1999), confidentiality should be addressed with research participants at the beginning of the research relationship. 395 0 obj <>/Filter/FlateDecode/ID[]/Index[374 32]/Info 373 0 R/Length 103/Prev 168502/Root 375 0 R/Size 406/Type/XRef/W[1 3 1]>>stream Bethesda, MD 20894, Web Policies The theoretical foundations of current confidentiality practices have been discussed elsewhere (Baez, 2002). An outside information technology organization, or a team member specifically tasked to ensure data protection, might be a good idea. confidentiality dataset Workshop on graduate research ethics education. Researchers also may need to consult with local community leaders before implementing a study. 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 interview studies, use the participants first name only (or even using an alias) when recording or publishing data. If so, details in the data will need to be modified.
_ #KH+ ai I sensed that Rachel still kept her sexuality a secret in many aspects of her life. Writing about refugees in the United States. The alternative approach that I propose draws insights from anthropology and emphasizes a greater consideration of the audience for ones research and a re-envisioned informed consent process. (6) U.S. Department of Health and Human Services. Cultural differences make up a large part of the potential difficulties to genuine informed consent, and researchers must be cognizant of the community structure in which they are conducting their research. ensor Breaches in confidentiality such as those in Fisher Folk also shatter the researcher-subject relationship and can damage the publics trust in researchers (Allen, 1997). 8600 Rockville Pike In general, access to information about individual participants should be restricted to the researcher, his or her advisor (if applicable), and any research assistants on a need-to-know basis. Because most human subjects research requires signed documentation of consent, subject anonymity is not as common in human subjects research. Hopkins M. Is anonymity possible? Although meticulous data cleaning can remove personal identifiers such as names, the contextual identifiers in individuals life stories will remain. This approach to confidentiality emphasizes a more nuanced consent process and takes into account the audiences of ones research. 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. data research privacy confidentiality issues ethics Therefore, its up to the entire research team to ensure that data, especially around the private information of human beings, is strongly protected. Informed Consent Form Templates. hb```d``g`a``heb@ !+sMGA!>@
,5(^`X\!jA2b;\6\flx WU"wVeF,
/57%ug+.l1^yU]hV[,]EU3KwvffqVX~/gYzki>n{ )QIA8!IAP`B@j@F\I PhJDD James T, Plazer H. Ethical considerations in qualitative research with vulnerable groups: Exploring lesbians and gay mens experiences of health careA personal perspective. Through qualitative research methods such as in-depth interviews and ethnography, researchers have the privilege of viewing our study participants lives and experiences in great detail. What I refer to as the dominant approach is, arguably, the most common approach to protecting respondent confidentiality in sociology. I first became aware of this disciplinary difference while participating in a National Science Foundation multi-discipline ethics workshop (National Science Foundation, 2005). 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). The answer, in some ways, is quite simple. Thus, it is not surprising that researchers perceive maintaining confidentiality as challenging and as an area of great uncertainty (Wiles et al., 2008). Page 774 (October 2004). A clean data set does not contain information that identifies respondents, such as a name or address (such identifying information might be stored elsewhere, in separate, protected files). The Belmont report. 
They should never be shared or left on slips of paper at work stations or desks. Back up any and all electronic databases (on and offsite), and have hard and soft copies of every aspect of your data, analysis, etc. (15) Marshall, P. A. For example, the names of respondents can be replaced with pseudonyms. 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). Respondents with stigmatizing traits or behaviors, such as drug users, would be harmed if their identities were revealed in conjunction with reports of their undesirable behavior. In hindsight, Ellis (1995) acknowledged that the problems that followed the publication of Fisher Folk could have been prevented by approaching the respondents with the data she planned to publish, allowing them to know what would become of their data, and making them aware of how they would be portrayed in the final research. Qualitative research design: An interpretive approach. The anthropologists, in contrast, viewed confidentiality as the choice of their research participants. She replied, Im a private person and I couldnt bring myself to go to a support group. This can be done in the written consent form or verbally before, during or after data collection. The sociologists largely followed the dominant approach, assuming that respondents want confidentiality and taking responsibility to edit the data to ensure confidentiality. 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. 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. In the research time, the Principal Investigator is ultimately responsible for the integrity of the stored data. Grinyer A. Future work is needed to identify the substantive areas of research and the study populations best suited for the alternative approach. Input your search keywords and press Enter. 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. Ethical Challenges in Study Design and Informed Consent for Health Research in Resource-Poor SettingsSpecial Topics in Social, Economic and Behavioral ResearchNo. As such, qualitative researchers face a conflict between conveying detailed, accurate accounts of the social world and protecting the identities of the individuals who participated in their research. Also look into different protections that are often featured within database programs themselves. This specification came after Nazi physicians routinely performed involuntary experiments in which the subjects were forced into participation.
