Ethical Concerns

(Informed Consent)

By MaryKate O’Connor

As you plan…“ “ It is important that you take care to be It is important that you take care to be respectful of your study’s participants” (Falk, respectful of your study’s participants” (Falk, 2005). 2005). When planning your research, it is crucial to When planning your research, it is crucial to inform all participants involved of your inform all participants involved of your intentions and the purpose of your inquiry intentions and the purpose of your inquiry before you begin to allow you to study them. before you begin to allow you to study them.

Reasons for ConsentAll participants need to be informed of the All participants need to be informed of the studies purpose and if there is any potential studies purpose and if there is any potential short term and/or long term harm or risk. short term and/or long term harm or risk. “ “ This concern is greatest in experimental This concern is greatest in experimental studies, during which a potentially harmful or studies, during which a potentially harmful or helpful intervention or treatment may be helpful intervention or treatment may be applied to or withheld from one group and not applied to or withheld from one group and not another” (70). another” (70).

Reason (cont.)Privacy- you must first check to make sure that Privacy- you must first check to make sure that participants are okay with you taking pictures, participants are okay with you taking pictures, work samples, videos, etc. Using pseudonyms work samples, videos, etc. Using pseudonyms might not be enough privacy for some people. might not be enough privacy for some people. Representation- “ Some people may be wary of Representation- “ Some people may be wary of how they will be perceived or represented by you, how they will be perceived or represented by you, the researcher” (70). the researcher” (70). Strictly voluntary- If participants chose to decline Strictly voluntary- If participants chose to decline from the study, researchers need to let them know from the study, researchers need to let them know that is okay and they will not be penalized. that is okay and they will not be penalized.

Minimize HarmEspecially when dealing with human research Especially when dealing with human research subjects, it is important to tell subjects, it is important to tell allall participants participants about about allall aspects of the research that might aspects of the research that might change their decision to continue and participate. change their decision to continue and participate.

Unfortunately, that was not the case in the Unfortunately, that was not the case in the Tuskegee Syphilis Study. “The investigators took Tuskegee Syphilis Study. “The investigators took advantage of the deprived socioeconomic situation advantage of the deprived socioeconomic situation in which the participants had experienced low in which the participants had experienced low levels of care (Heintzelman, 2003). levels of care (Heintzelman, 2003).

TypesDirect: Person is presentDirect: Person is presentSubstitute: 3Substitute: 3rdrd person. If the person has a legal person. If the person has a legal guardian, you need a substitute (Schillinger, ppt)guardian, you need a substitute (Schillinger, ppt)Be sure to record and keep all information in Be sure to record and keep all information in writing and put it in a safe place. “To protect writing and put it in a safe place. “To protect yourself in litigation, it is important that the yourself in litigation, it is important that the communications process itself be documented. communications process itself be documented. Good documentation can serve as evidence in a Good documentation can serve as evidence in a court of law that the process indeed took place” court of law that the process indeed took place” (www.ama-assn.org)(www.ama-assn.org)

ElementsIf an individual has the ability to understand, If an individual has the ability to understand, evaluate, and make a decision or whether to evaluate, and make a decision or whether to participate or not, they may be a participant participate or not, they may be a participant (Schillinger, ppt)(Schillinger, ppt)You must 18 or older or a emancipated minorYou must 18 or older or a emancipated minorThe information the researchers provide must The information the researchers provide must be completed and understood by all members. be completed and understood by all members.

Consent formsA wonderful sample of a consent form is A wonderful sample of a consent form is included in our textbook, included in our textbook, The Power of The Power of QuestionsQuestions on page 72. It includes the purpose on page 72. It includes the purpose for the study, the procedures, the researchers for the study, the procedures, the researchers intentions throughout the study, potential intentions throughout the study, potential risks or benefits, and reassurance that all risks or benefits, and reassurance that all identifiable information will be removed or identifiable information will be removed or change to ensure the students privacy. It also change to ensure the students privacy. It also includes a written signature for the parents to includes a written signature for the parents to sign of on for proof of consent. sign of on for proof of consent.

Most Important Thing

When in doubt, just ask When in doubt, just ask for permission!!for permission!!