Chapter 3
- Do No Harm
- Feb 2, 2017
- 4 min read
In exploring the reading I have found that there are many ways research can turn from completely ethical, to invasive of someone's privacy, and finally plain out wrong. The dilemma is knowing when your research subject has evolved into something unethical. Are these situations something that we can measure? Is it something that is ingrained in us as humans or can it be that we are always walking a fine line?
We know now that during WWII Nazi physicians where doing unfathomable medical experiments with human subjects. These medical experiments led us to place ethical rules to prevent this type of treatments called the Nuremberg Code. This code was to required voluntary consent from the participant in the any study that involved human subjects. In other words you are aware of the study and you are willingly wanting to be in the research. After Nuremberg code we also had the Declaration of Helsinki, adopted by WHO in order to have guidelines for clinical investigation. Although having implemented all this regulations in order to prevent un ethical treatments of people, we still have some researchers who still broke this rules.
In example the Tuskegee syphilis study, the men in the study where given false information on what the study was about. These men where in actually being researched because they had been infected with a sexually
transmitted disease called syphilis, which at the time the experiment began had no cure. Not long after the research began penicillin was created in order to combat the syphilis. The researchers where aware of the cure and hid it from the participants. Which created a huge issue in regards to ethics. This study is one of many times the researcher has cross the boundaries of ethics. There is a scale for which a researcher needs to weigh his or her research. Biggest question is, will the study cause more harm than good by an ethical standpoint.
Due to so many experiments that were unethical, congress passed the National Research Act which directs all sponsored research to establish review committees called intuitional review boards (IRBs). These boards take care of reviewing any research proposed that involves human subjects (Berg,Lune : 69). In addition we have the Family Education Rights to Privacy Act which was created in order to protect students and parents of sed students. It prohibits the release of personal information to anyone else without written consent of student or parent if student is a minor . Lastly the Privacy Act of 1974 offered additional legal assurance against invasive research on human subjects. This legislation was primarily for protection against large corporations and federal institutions.
IRBs are a crucial part of research in one instance they can help with ethical dilemmas in research but for some its interference with research projects. IRBs roles are to make sure researchers obtained informed consent, that subjects where advised of both potential risks and benefits form participation. They also have to have an assessment of the risk to benefit ratios of proposed study. There are instances where a full review may not be need called an expedited review usually are done a chair member or an IRB committee member, not the whole board. If in need of an expedited review, the are Code of Federal Regulations (CFRs) that can be excluded form being reviewed. 1. The informations obtained is recorded in such a manner that the participants cannot be identified. 2. Any disclosure of participants' responses outside the research cannot reasonably identify the subject. 3. The study and its results for not place the participant at risk of criminal or civil liability, nor will it be damaging to the participant's financial standing, employability, or reputation (e.g., an observational study in which subjects are not identified). 4. The research will be conducted on preexisting data, documents, records, pathological specimens, or diagnostic specimens, provided these items are publicly available if the information is recorded by the investigator in such a manner that subjects cannot be identified. BecauseIRBs have been made essential for research and the protection of human subjects, there are times where IRBs can get in the way of real research but in that aspect we need to find a common ground with IRB to get the research well and active.
Active and Passive Consent Active consent is when a consent is required to submitted back before any subject is interviewed to placed into research. Passive consent is when consent form is sent out but nothing is received back in regards to the research which automatically entitles permission for the research. This mostly concerns minors, for whom need to obtain some sort of consent to be a participant due to age. There is a large controversy in regards to passive consent, some parents claim that by not sending back the consent it should be taken as no. In example in New Jersey the had to pass a law to not allow passive consent, parents must sign the consent form in order to include their child in research. This causes some issues when it comes to email or internet consent. Thought the online surveys or interviews before starting their must be a term and conditions to indicate informed consent, and whether you read or not as soon as you click yes it will be submitted as consent.
Important when conducting research, please be just and do not imply there is some sort of gain or loss if does not participate. The participant must consent and understand all implication of the study, they must not feel that by not participating will be losing in an incentive or be penalized for not participating. Lastly we as researcher must maintain confidentiality, and safe guard all documentation for the participant. They must be anonymous and any documentation must be safe from compromise.
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