User:Htw3/ResourcesPurple
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[edit] Ethical research in social science
Ethics is the study of what is proper and improper behavior based on ideas of right and wrong.
What are the researchers moral duties and obligations?
[edit] Outline of ethics
Ethical research becomes extremely important when dealing with human subjects. Research is the systematic process of collecting and analyzing information (data) in order to increase our understanding of the phenomenon about which we are concerned or interested and communicating what we discovered to the larger scientific community. The goal is to study ethics and what should occur in regards to human subject research treatment .
[edit] Historical development
"HSR experiments were recorded during vaccination trials in the 1700s. In these early trials, physicians used themselves or their slaves as test subjects. Experiments on others were often conducted without informing the subjects of dangers associated with such experiments" (http://en.wikipedia.org/wiki/Human_experimentation). Before the Pure Food and Drug Act was passed in 1906 there were no regulations or concerns with regards to research ethics on humans. The Nuremburg Code, in 1946, was the first law which stated that researchers must have consent from their human subjects. This was due in whole to the killings of numerous individuals within Nazi concentration camps. Research has been conducted on human subjects dating back to WWII when the Nazis experimented (unethically) on the Jews. "The Nazi physicians performed brutal medical experiments upon helpless concentration camp inmates. These acts of torture were characterized by several shocking features: (1) persons were forced to become subjects in very dangerous studies against their will; (2) nearly all subjects endured incredible suffering, mutilation, and indescribable pain; and (3) the experiments often were deliberately designed to terminate in a fatal outcome for their victims" (Cohen). The basis of the Nuremburg Code is that the benefits of the research must outweigh the risks.
Research has been conducted unethically in other experiments, not in regards to torture but in cases of consent, deception, privacy, and confidentiality. Such experiments include: the Milgram Experiment of 1961 (electric shock treatment), Humphrey's Tea Trade of 1970 (male on male sexual encounters), and the Zimbardo Guard Study of 1971 (college student simulated prison experiment) just to name a few. In these experiments the subjects did not always know what they were getting into, they were not all voluntarily participants, or they
It was not until the Institutional Review Board (IRB) was established in 1974 by the Department of Health, Education, and Welfare that these unlawful experiments against humans came to a hault.
Another step in ethics was the Tuskegee Syphilis Study (1932-1972). Six hundred African American males were closely watched for forty years. Four hundred of the six hundred had been stricken with syphilis yet were not told about their disease. The participants were denied treatment and many died during the study. Once the word of the study reached others only then was it stopped. President Clinton made a hearfelt apology to all of those affected and their families in 1997.
The United States Cenus is taken every ten years. The cenus has recently gone to a computer database for collection purposes. This has only increased the the risk of transfered data. In order to protect one's self the US law does not require any individual to fill out a census form. In the past, Census data has had various negative uses. Hitler used European census data during World War II. During the Civil War General Sherman used Census Data to locate enemies while marching through Georgia. Misuse of census data is found all over the world.
[edit] Institutional review board
An Institutional Review Board is a group of organizational and community representatives required by federal law to review the ethical issues in all proposed research that is federally funded, involves human subjects, or has any potential for harm to subjects (Schutt I-18). Federal regulations require that every institution that seeks federal funding for biomedical or behavioral research on human subjects have an institutional review board that reviews research proposals (Schutt 82).
A series of recommendations focuses on improving ethics review of protocols... (Federman 2)
Recommendation: The Institutional Review Board (IRB), as the principal representative of the interests of potential research participants, should focus its full committee deliberations and oversight primarily on the ethical aspects of protection issues. To reflect this role, IRBs should be appropriately renamed within research organizations' internal documents that define institutional structure and polices. The committee suggests the name "Research Ethics Review Board" (Research ERB). (Recommendation 3.1) (Federman 9)
To address such needs most institutions and organizations have formulated an Institutional Review Board (IRB), a panel of persons who reviews grant proposals with respect to ethical implications and decides whether additional actions need to be taken to assure the safety and rights of participants. By reviewing proposals for research, IRBs also help to protect both the organization and the researcher against potential legal implications of neglecting to address important ethical issues of participants. (Trochim, http://www.socialresearchmethods.net/kb/ethics.php)
[edit] Human subject research/ethical principals
Human Subject Research - Ethical Principles
The Code's standards concerning the treatment of human subjects include federal regulations and ethics guidelines emphasized by most professional science organizations:
Research should cause no harm to subjects, at no point should subjects feel distressed. Deception needs to be left out of the research process, under no circumstance should a researcher lie to their subjects. Participation in research should be voluntary, and therefore subjects must give their informed consent to participate in the research. Researchers should be very cautious when dealing with vulnerable clients (persons who are mentally ill, incarcerated people, or minors) they should make sure to get the proper consent. Researchers should fully disclose their identity. Anonymity or confidentiality must be maintained for individual research participants unless it is voluntary and explicitly waived. Actively attempt to remove from the research records any elements that might indicate the subjects identities. And finally, benefits from a research project should outweigh any forseeble risks (Schutt 82).
The specific structure of a protection program is secondary to its performance of several essential functions. These functions include: 1) comprehensive review of protocols, (including scientific, financial conflict of interest, and ethical reviews), 2) ethically sound participant-investigator interactions, 3) ongoing (and risk appropriate) safety monitoring throughout the conduct of the study, and 4) quality improvement (QI) and compliance activities (Federman 6).
Some principles Jones states in regards to electronic information gathering principles follows:
- 1.) Openness: Existence of data banks should be publicly known
- 2.) Individual Access and Correction: People should have access to the data collected about themselves.
- 3.) Collection Limitation and Relevance: Personal data should be collected for one specific, legitimate purpose.
- 4.) Use Limitations: Information should be used only for purposes specified at the time of collection.
- 5.) Disclosure Limitation: Personal data is not to be communicated externally without consent of the subject who supplied the data.
- 6.) Security: Personal data should be reasonably guarded against risks such as loss, unauthorized access, modification, or disclosure(Jones 247).
[edit] Ethical concerns
Researchers have ethical obligations to take into account when conducting interviews (one on one or face to face), case studies (individual, group, or event), focus groups (6-10 people), unobtrusive measures (artifacts, things left behind), histography (follows a persons life history), or observations (ethnography). Researchers must use a systematic process to collect data without interfearing or harming your subjects. The following are a list of Ethical Concerns to take into consideration when performing research on human subjects.
Privacy is one of the most important aspects with regards to ethics. Never should a researcher breech anyone's privacy, it is his or her job as a researcher to protect your subjects. Another ethical concern is misrepresentation. Researchers are not to suggest false interest, say one thing but study another, or mask the identities of your subjects. Under no circumstance are they to ever harm or distress, (physically or psychologically) their research subjects. Throughout their research process they must leave their bias thoughts out. Whether it is subjective or objective it does not belong in the research, they must only include the facts. And finally there is the danger of invisibility. Researchers should never ever put their subjects in a compromising position where there is a potential for danger.
As a relatively new form of interpersonal contact minus nonvisual cues, within internet circles, the need has arisen to develop a "netiquette", or rules of thumb, to encourage politeness, civility, and enhanced understanding among participants. These codes have been formulated by users as communicative problems are encountered and identified in the process of employing the medium (Jones 244-245).
[edit] Current research / new directions in research
Although formation of such rules of conduct and ethical inquiries into the communicative use of the computer are still at an early stage of development, analogous guidelines for encouraging ethical practices in the conduct of on-line research are only now being discussed. At present, because the internet is part of a technology in continual flux and rapid evolution, there is incomplete awareness of the issues at stake, let alone consensus on the best ways to proceed. Nonetheless, several key ethical concerns have become apparent. Perhaps chief among these issues of:
- Privacy
- Confidentiality
- Informed consent
- Appropriation of others' personal stories
(Jones 245)
The University of Cornell's Jon Kleinberg has developed an algorithm for analyzing web sites and interactions. The algorithm provides a way of identifying communities of interest on the Web, which promises to improve Web searching.
census simulated data http://lehd.did.census.gov/led/library/techpapers/tp-2003-10.pdf
[edit] Relevant links
- http://www.asanet.org/cs/root/leftnav/ethics/code_of_ethics_table_of_contents
- http://www.ojp.usdoj.gov/nij/funding/humansubjects/hs_01.html
- http://www.niehs.nih.gov/research/resources/bioethics/whatis.cfm
- http://ccnmtl.columbia.edu/projects/cire/pac/foundation/index.html
- http://www.kent.ac.uk/nslsa/images/slsadownloads/ethicalstatement/ethics_drft2.pdf
- http://www.socialresearchmethods.net/kb/ethics.php
- http://64.233.169.104/search?q=cache:RCXMEPXOK1cJ:epic.org/privacy/census/+census+privacy&hl=en&ct=clnk&cd=1&gl=us
- http://www.trnmag.com/Stories/2005/120505/View_Jon_Kleinberg_120505.html
[edit] Annotated bibliography
- Federman, Daniel D., Kathi E. Hanna, and Laura L. Rodriguez, eds. Responsible Research. Washington, D.C.: The National Academic P, 2003.
- Jones, Steve, ed. Doing Internet Research. London: Sage, 1998.
- Schutt, Russell K. Investigating the Social World: the Process and Practice of Research. Ed.
Jerry Westby. 5th ed. Thousand Oaks: Pine Forge P, 2006. - "Guidance for Institutional Review Boards, Clinical Investigators and Sponsers." U.S. Food and Drug Administration. 2001. U.S. Dept. of Health and Human Services. 29 Jan. 2008 <http://www.fda.gov/oc/ohrt/irbs/default.htm>.
- Cohen, Baruch C.,"The Ethics Of Using Medical Data From Nazi Experiments". Jewish Law Articles. <http://www.jlaw.com/Articles/NaziMedEx.html>.
- National Research Council. Protecting Participants and Facilitating Social and Behavioral Sciences Research. Washington D.C.: The National Academies P, 2003.