Confidentiality+through+the+right+to+privacy

=Confidentiality Through The Right To Privacy= Shawn Chrisman and Mary Jeanne Smith

How does the topic affect research proposals? “Confidentiality exists when there is a link between personal information and the research participant’s identity but that information is protected from others.” (McKenzie et al., 2009 quoted in Cottrell, R and McKenzie, J, 2011 p. 111). Monette, et al. use a more descriptive explanation of confidentiality. They define confidentiality as the process of ensuring that the data collected about or from research participants is not released in a public manner so that the data cannot be traced back to a specific subject (Monette, Sullivan & DeJong, 2011). Some forms of research rely on participation by individuals, and the problems that arise out of individual participation frequently affect the research proposal. According to the “Ethical Principles of the Belmont Report,” a document that identifies three fundamental ethical principles, participants in a research study are to be respected, protected from harm, and treated justly. Confidentiality is related to each of these principles. A participant’s information should be “kept under lock and key” to respect the individual’s privacy, to ensure that no harm such as ridicule or repercussion occurs, and to afford the participant a fair and equitable experience during and after the research study. The researcher needs to build into the research proposal steps to provide confidentiality. The steps should include Thus, confidentiality affects research proposals by adding another layer on the research process, a layer that will take additional thought, planning, time, expense, and caution.
 * giving clear and comprehensive explanations of the reasons for the collection of data and inclusion in the study,
 * providing appropriate confidentiality forms,
 * ensuring safe storage of the data collected (double blind storage: locked files in a locked room),
 * affording opportunities for the participants to edit or destroy any data that applies to them after the research has been completed,
 * using discreet language in the final presentation and publication of the data.
 * publishing the data in aggregate form. The researcher needs to factor into the proposal the fact that information should be reported in terms of percentages of the sample responses rather than raw data..

What must be considered? Confidentiality through the Right to Privacy entails several considerations for the researchers.
 * 1) The option to choose anonymity (Anonymity is the condition that "exists when there is no link between personal information and the research participant's identity". (McKenzie et al., 2011, p.111)
 * 2) Clear definitions of confidentiality and privacy: When selecting participants, the researchers must be clear in their disclosure of confidentiality and privacy. The promise of confidentiality can impact subject’s responses, especially in an intimate research setting like sexuality.
 * 3) Sensitivity of the issues and sensitivity of the participants
 * 4) <span style="font-family: Tahoma,Geneva,sans-serif; font-size: 12pt;">Adherence to HIPPA regulations. [|The Privacy Rule and Research Information from the National Institutes of Health Website] provides detailed information on the Health Insurance Portability and Accountability Act (HIPAA) of 1996 regulations
 * 5) <span style="font-family: Tahoma,Geneva,sans-serif; font-size: 12pt;">Legality: The researcher can be held legally liable if proper disclosure is not handled appropriately
 * 6) <span style="font-family: Tahoma,Geneva,sans-serif; font-size: 12pt;">Individual perceptions
 * 7) <span style="font-family: Tahoma,Geneva,sans-serif; font-size: 12pt;">Family, medical, genetic, and psychological status and history of the participants.
 * 8) <span style="font-family: Tahoma,Geneva,sans-serif; font-size: 12pt;">Attention to detail and proper form.
 * 9) <span style="font-family: Tahoma,Geneva,sans-serif; font-size: 12pt;">Proper collection of data and storage of data: To help ensure confidentiality, researchers often label the participants with a numeric code versus using names. Researchers may keep data in separate files. The first file may contain responses linked to subject numbers and the second file contains the subject numbers related back to names or other identifiable information (Monette et. al, 2011).
 * 10) <span style="font-family: Tahoma,Geneva,sans-serif; font-size: 12pt;">Precise, discreet reporting of data
 * 11) <span style="font-family: Tahoma,Geneva,sans-serif; font-size: 12pt;">Special attention to at-risk groups such as minors, the elderly, the poor, and mentally vulnerable individuals or groups.
 * 12) <span style="font-family: Tahoma,Geneva,sans-serif; font-size: 12pt;">Consideration of discrepancies in demographics: age, gender, and cultural variations.

<span style="color: #008000; font-family: Tahoma,Geneva,sans-serif; font-size: 14pt; line-height: 28px;">What challenges does it represent for research around sexuality related research? <span style="font-family: Tahoma,Geneva,sans-serif; font-size: 12pt;">Confidentiality poses several challenges for research around sexuality related topics.


 * 1) <span style="font-family: Tahoma,Geneva,sans-serif; font-size: 12pt;">Potential uneasiness of the researcher himself or herself with sexual aspects of the research study.
 * 2) <span style="font-family: Tahoma,Geneva,sans-serif; font-size: 12pt;">Lack of education on the role and execution of confidentiality and privacy requirements specifically related to sexual questions and what are typically termed “private” matters such as sexual practices.
 * 3) <span style="font-family: Tahoma,Geneva,sans-serif; font-size: 12pt;">Cultural and developmental differences and disparities. Sexual mores may be different in different cultures and what is necessary to keep confidential may vary to some degree. In the article, Privacy and Confidentiality: As Related to Human Research in Social and Behavioral Science (Research Involving Human Participants V2), Joan Sieber suggests that employing researchers from the culture of the participants may minimize this problem. This tactic can be extended to gender, sexual orientations, or other major groups. In addition, researchers could elicit the help of research assistants who have worked with these populations.
 * 4) <span style="font-family: Tahoma,Geneva,sans-serif; font-size: 12pt;">There is a greater challenge to protect data that is of a sexual nature.
 * 5) <span style="font-family: Tahoma,Geneva,sans-serif; font-size: 12pt;">The researcher needs to be careful with the content of the final publication and the choice of the places where the results are to be published.
 * 6) <span style="font-family: Tahoma,Geneva,sans-serif; font-size: 12pt;">Research subjects could encounter severe negative financial, legal, and emotional consequences including but not limited to embarrassment, loss of self-esteem and self-identity, exclusion from a desired group, loss of a job, and repercussions, especially when the research study involves sexual content. For this reason, researchers should be aware of the challenges and pay close attention to confidentiality and privacy issues during their study.

<span style="color: #008000; font-family: Tahoma,Geneva,sans-serif; font-size: 14pt; line-height: 28px;">Give one example that illustrates the issue. <span style="font-family: Tahoma,Geneva,sans-serif; font-size: 12pt;">An example of a study using confidentiality might involve a quantitative study of private high school students and associated sexual behaviors. Questions on the associated survey ask the presence and frequency of a range of sexual thoughts and behaviors. These students may present a level of uncertainty and anxiety about disclosing honest answers to personal questions for fear of reprisal. The private school may have a strong religious affiliation. If so, its students may perceive that the school will frown upon potential presence of sexual behaviors (e.g., genital intercourse, abortion, same-sex activities) and worry that they may be individually identified.

<span style="font-family: Tahoma,Geneva,sans-serif; font-size: 12pt;">The researchers need to address confidentiality in order to ensure that responses are accurate and not influenced by school or cultural expectations. The research team would explain informed consent and confidentiality to the participants. Each student would be given a numeric code, and only this code would be utilized on all survey and interview materials. The only identifiable information would be a file linking the numeric code back to respondent information. This could be name or other information such as age and gender. The data collected would be kept in a different file. All information would be collected by the independent researchers and kept at an off-site location, away from the school facility. Any information released to the public would be done in aggregate form with no personally identifiable information included. In order to protect the privacy of the students, the parents may be requested to sign releases tat prevent the parents from obtaining access to their child’s information.

<span style="font-family: Tahoma,Geneva,sans-serif; font-size: 12pt;"> Sexuality-related research is extremely intimate and personal to the subjects involved. The participants may prefer that their information be kept anonymous. It is important for the researchers to be aware of the need for confidentiality, and employ methods to ensure confidentiality for the study participants.

<span style="color: #008000; font-family: Tahoma,Geneva,sans-serif; font-size: 14pt;">﻿Resources

<span style="color: #333333; font-family: Tahoma,Geneva,sans-serif; font-size: 12pt;">Columbia University. . //Privacy and confidentiality cire current issues in research ethics//. <span style="font-family: Tahoma,Geneva,sans-serif; font-size: 12pt;"> Retrieved from []

<span style="color: #333333; font-family: Tahoma,Geneva,sans-serif; font-size: 12pt;">Cottrell, R., & McKenzie, J. (2011). //Health promotion & education research methods using the five-chapter thesis/dissertation model//. (Second ed.). Sudbury, MA: Jones and Bartlett.

<span style="font-family: Tahoma,Geneva,sans-serif; font-size: 12pt;"> Government of Canada. (2009). //Protection of privacy and confidentiality in research//. Retrieved from [] (Gives an international perspective.)

<span style="font-family: Tahoma,Geneva,sans-serif; font-size: 12pt;">Monette, D.R., Sullivan, T.J. & DeJong C.R. (2011). //Applied social research: A tool for the human services// (8th ed.). Belmont, CA. : Brooks/Cole.

<span style="font-family: Tahoma,Geneva,sans-serif; font-size: 12pt;"> Sieber, J. (2003-2010). //Privacy and confidentiality: as related to human research in social and behavioral science (research involving human participants v2)//. Retrieved from []

<span style="font-family: Tahoma,Geneva,sans-serif; font-size: 12pt;"> U.S.Department of Health and Human Services. (2007). //Health insurance portability and accountability act (hipaa) of 1996//. Retrieved from []