Internet-Based Research – SBE Answers

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Questions Answers
Which of the following examples of using the internet to conduct research meets the federal definition of research with human subjects? Conducting an online focus group with cancer survivors to determine familial support systems. The researcher also invites subjects’ significant others to be a part of the focus group.
Which of the following methods could be considered a “best practice” in terms of informing respondents how their answers to an online survey about personal information will be protected? The investigator uses the informed consent process to explain how respondent data will be transmitted from the website to his encrypted database without ever recording respondents’ IP addresses, but explains that on the Internet confidentiality cannot be absolutely guaranteed.
Which of the following examples of using the Internet to conduct research meets the federal definition of research with human subjects? Conducting an online focus group with cancer survivors to determine familial support systems. The researcher also invites subjects’ significant others to be a part of the focus group.
Consent to participate in research is an ongoing process. Which of the following strategies would help ensure that participation in a survey about a sensitive personal topic remains voluntary throughout a study? Designing the survey so that subjects are not forced to answer one question before going to the next.
To minimize potential risks of harm, a researcher conducting an online survey can: Design the survey so that no direct or indirect identifiers are collected.
The Internet can be used as a research tool or as the object of a study. Which of the following examples best describes an investigator using the Internet as a research tool? An investigator uses his Facebook wall to post a URL link to a survey he is hosting on SurveyMonkey.
The federal regulations define both a human subject and research separately, but both definitions must be met to qualify as human subjects research. Thus, research with human subjects is defined as a systematic investigation (intent to contribute to generalizable knowledge) involving living individuals about whom a researcher conducting research obtains information through intervention or interaction with the individual, and uses, studies, or analyzes the information or obtains, uses, studies, analyzes or generates identifiable private information (Protection of Human Subjects 2018). Conducting an online focus group with live human beings to research familial support systems would therefore meet the definition of research with human subjects. Analyzing the number of visits to a website provides information about the website itself not about the people who visit it and does not meet the federal definition of research with human subjects. Neither does gathering information about deceased individuals. Using data that is publically available and de-identified is no longer private or personally identifiable, and would also not meet the federal definition of research with human subjects.
Consent to participate in research is an ongoing process. Which of the following strategies would help ensure that participation in a survey about a sensitive personal topic remains voluntary throughout a study? Designing the survey so that subjects are not forced to answer one question before going to the next.
Voluntary participation in research includes the right to withdraw from a study at any time and the right to choose not to answer questions. Online surveys that force subjects to answer one question before going to the next violate the requirement that all participation in research is voluntary. Providing contact information for the researcher, privacy policies, and a description of the survey are important, but they do not address the requirement.
Which of the following online research strategies raises the most concerns regarding the ethical principle of respecting the autonomy of research subjects and the corresponding federal regulations requiring informed consent? A researcher proposes to join a moderated support group for cancer survivors posing as a survivor. She plans to insert comments to see how the members respond.
The study in which the researcher pretends to be a cancer survivor involves deception and research without any informed consent process. Therefore, the study raises concerns about the ethical principle of respect for persons. Any compromise of the principle should be justified by any scientific benefit to be derived from the study. When a support group or a blog is open to any and all readers, it can be argued that the communications posted are not intended to be private and can therefore be observed and recorded without informed consent. The researcher studying interracial adoptees used the internet in a manner comparable to posting a flyer on a bulletin board.
Which of the following methods could be considered a “best practice” in terms of informing respondents how their answers to an online survey about personal information will be protected? The investigator uses the informed consent process to explain how respondent data will be transmitted from the website to his encrypted database without ever recording respondents’ IP addresses, but explains that on the internet confidentiality cannot be absolutely guaranteed.
Although there are no guaranteed methods to assure absolute confidentiality of research data collected online, some internet-based research experts have identified “best practices” for describing commonly accepted confidentiality protections, such as including explanations about how data are transmitted from the subject to the investigator, how the investigator will maintain and secure the data. Consent processes should also include a discussion to emphasize that there is no way to guarantee absolute confidentiality if data are of a personal or sensitive nature.
The internet can be used as a research tool or as the object of a study. Which of the following examples best describes an investigator using the internet as a research tool? An investigator uses his Facebook wall to post a URL link to a survey he is hosting on SurveyMonkey.
Investigators use the internet as a research tool when they actively engage, or interact, with their participants online. This can include distributing an instrument via email or hosting a web-based survey on an online survey provider, recruiting subjects from online panels, conducting interviews on-line, facilitating focus groups in private chat rooms, and posting on-line experiments or interventions on web-based service providers.
Researchers endeavouring to conduct an online study should consider that there are some potential risks of harm to subjects unique to internet-based research. One of these risks is: Individuals may post private identifiable information about themselves online without intending it to be public and available to researchers.
The information posted online could, conceivably, be accessible to anyone with an internet connection. However, people may post their private identifiable information online without the intention of this information being public. Private identifiable information that can be accessible to anyone can create the potential for several different risks of harm to subjects who may not be aware that their information is public. Assuming a pseudonymous online identity does not pose any risks of harm to subjects. Though it is true that researchers can recruit, consent and debrief subjects online with little to no interaction, this in of itself, would also not pose any risks of harm to subjects. Similarly, waiving the documentation of consent does not pose any potential risks of harm to subjects, and is not unique to internet-based research.
To minimize potential risks of harm, a researcher conducting an online survey can: Design the survey so that no direct or indirect identifiers are collected.
In most internet-based research, the primary risk of harm is a breach of confidentiality. A simple way to help maintain the confidentiality of a subjects’ identity is not to collect direct or indirect identifiers. Suggesting to subjects that they should print a copy of the informed consent form does not protect them from an inadvertent breach of identifiable responses. Similarly, complying with the Terms of Service does not protect against a breach. Specifying that all subjects be of legal adult age does not ensure compliance.

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