LDS-Current Events-Ethical Issue

LDS-Current Events-Ethical Issue This assignment is regarding current events related to ethical issues with research subjects. This would require a selection of an article. An example that was used was the following by another student: The U.S. Department of Health and Human Services, Office of Research Integrity (2015), found that Anil Potti, M.D. falsified data in papers, grant applications, manuscripts, and research records concerning his research into additional medical applications of the drug dasatinib. According to Wikipedia, the drug is used for certain leukiemia-type cancers and was being evaluated for use in treatment of other cancers, including prostate cancer. Although most of the case summary is medical terminology, it appears Dr Potti was researching its use in treatment of lung cancer. You will see the findings against the researcher and a voluntary settlement agreed to by the researcher. My heaviest question is, what happens financially? There is no mention of the researcher being required to repay the 6 grants awarded by the Federal gevernment. With research funding being so extrememly tight, it seems to me repayment should be part of the settlement agreement." You create the threads for this this area. Put your subject area in: send us links in what you are finding. What outrageous things are you learning, reading about, twittering, and other places. Apply what you are learning in these discussions. What got screwed up and why? Who is responsible? These can be local, state, national, and international. (Equal opportunity to try and find some justice.) Each class member is expected to contribute at least one current event and one Question Thread regarding a current event where there are ethical issues, social justice issues, or downright shaving the law with a razor. Enjoy and respond with knowledge AND emotion, using what you have learned. LDS7004 Module Four Lecture Notes This may read somewhat like a review, since we are already at Module IV, but as you begin to form your dissertation, you must be conscious of the many parts and subparts that present ethical and moral issues in research. There will be rules of self, institution, research environment, professional organization, and perhaps even grant requirements, if you win one for your dissertation from a private funding source, or from the federal government. In this module we discuss the subtle differences between ethics and morality, and guidelines are presented for conducting and presenting a variety of research suitable for a dissertation. We are either moral or immoral. We can be both in our lives many times. Moral is, essentially, doing the right thing, sometimes when it is difficult or costly to do the right thing. Immoral is knowing the difference between the right thing and the wrong thing, and then deciding to do the wrong thing, usually for our own personal interest, or in the interest of the company where we may be employed. Research ethics are, therefore, principles we use to decide what is acceptable (I prefer “good”) practice in any research project, no matter how difficult it may be to accomplish. Research ethics frowns upon any short cuts. Researchers must never violate the moral and legal rights of any participant in research. A researcher may think that the work is so important, so necessary, that the participant can be ignored, manipulated, emotionally traumatized, or “used” with little regard – the data becomes like some sort of voracious animal, and the researcher’s appetite for that data takes over any concern for subjects. Subjects need to know the standards for the research, so they can agree or “question” or say, “no thank you” to the researcher. Good scientific practice is ensured by the ethical codes, and it also means that whatever the researcher finds could be trusted by the public as discovered through the best practices in serious research. Yes, things do go wrong in research that can negate the final outcomes, but malicious use of the variables in research can be worth millions of dollars in investment if the data is twisted or reported in anyway to skew results to what someone wants it to say. Most of this has to do with working with what are called “vulnerable” populations. Sometimes there are licensing requirements for those collecting certain kinds of data – therefore, not just anyone can collect data in these cases. Some of the very best studies are the ones that whatever is found, it will increase the knowledge base about a particular subject. We have spoken a lot about informed consent and confidentiality, but not much on conducting research to Common Ethical Issues within the Dissertation Process Rules and ethics and morality for all dissertations Ethical codes • Participants have moral and legal rights. • What are the “agreed standards” between the researcher and the participants? • Cling to good scientific practice in doing research. • Codes are protections for the public against fraud, cheating, and scientific skullduggery. Ethics and Morals? Which is which? • There is a distinction between the two -- • Morals refer to an unwritten set of values that provide a frame of reference. We make many of our decisions using our own moral compass and, thus, regulate our behavior; • Ethics is generally a written code of valued principles that we use in context to a problem. Research Studies and Compliance • Comply with all levels of legal requirements; • Comply with any and all licensing requirements; • Commonly agreed upon international standards – Beneficence (do positive good); Non-malfeasance (do no harm); informed consent; and confidentiality/anonymity have a result of positive good in some way, and at the very least, to do no harm. These two require clear thinking and very good research design. This slide is very much self-explanatory; however, for the record, I believe that all participants are vulnerable in some way, and most good researchers think the same way. First, all children under the age of 18 are protected – highly protected, I might add; adults with learning and communication issues also come under the disability protections. The elderly are protected because of age related issues in their cognition as well as their mobility. And, there are still others. If you need to recruit subjects in these vulnerable classifications, you also need to think about where you will be interacting with them. Sometimes researchers can put themselves into dangerous situations, especially in one-to-one interviewing with a person in a vulnerable classification. Private, unsupervised access is never a good idea, and you should think about designing a research project that does not require that. Good research can be done in a public place, especially with children. These questions are just the first of eight more. You need to tell the prospective participant as much as you can about the study, including the logistics, dates, time of day, how many days, if there is any compensation, what kind of environment where the data will be collected, how long it will take. Logistical kinds of questions are essential for a participant to understand exactly what he or she is getting into. There are only a few extra comments to this slide. Observational research will require a very carefully crafted rubric that defines exactly what you are going to be observing and how what you are seeing and/or hearing will be coded. The best rule is always this: You are a researcher. Think of yourself as working for a top secret organization. Do your job and don’t gossip about anything or anyone. Most researchers get into trouble with this area because they engage their mouths before they engage their brains. You are a professional at all times. Deception is not a good practice and deliberate deception is rarely used or can be justified. Withholding information is more common. Even so, some subjects may get upset that you withheld information and become angry or upset. If the lines between deception and withholding information get blurred, the researcher should rethink the design of the study to prevent this from happening. Research Participants – Your Subjects • This is really your first moral AND ethical question – who do I wish to recruit. Are my subjects classified as “vulnerable?” • Vulnerable: All children under the age of 18; vulnerable adults with learning or communication disabilities; patients in hospitals, nursing homes/assisted living, in care within the social services networks. Research Participants – Yourselves and Your Subjects • Persons with mental illness • Persons with addictions to illegal drugs, alcohol, cigarettes, and food • Criminal background checks for yourself and any data collectors • Other factors that must be considered once your population is defined for research. Consent of the subject • Informed about the nature of the study, if at all possible • Parents must be informed, if using children • Design a participant information sheet that matches your study. • Participants can ask questions • If you use a questionnaire, a same of the kind of questionnaire is appropriate to use Observational Research • Big rule to remember: Unless the subject gives consent to being observed, observational research can only be done where participants would generally expect to be observed by strangers. • Individuals have a right to privacy. • In today’s culture, a private place and a public place may have to be clearly defined. Deception • Only used when subjects may modify behavior if they know what the researcher is looking for, so by giving the full explanation, no reliable data can be collected. • There is a difference between deception and withholding information. • Important: If a subject might be upset or angry if information is withheld, you need to rethink your design. Protection of Participants • No physical or mental harm should come to any participant. • Participants have the right not to answer any question, AND you must tell them that. • No discussions of any kind of results you have gotten from any subjects participating in the study • Subjects become numbers or letters – not names Humans are not always predictable, and every means should be used to guard against any harm from a study. This is another slide that does not take much more explanation. Subjects have given of themselves and their time. Debriefing is a good time to thank them and tell them how much you appreciate their participation. Children may receive a small gift, such a pencils, books, or Superhero band-aids (Who knew – they love them!). Part of the debriefing is to obtain permission to send a summary of your findings to your participants, after the study is completed. Sometimes researchers think that all is under control. They have thirty subjects, the timeframe is short, and the study is easy. Then, something happens, and ten people either withdraw, don’t show up, decided to make your questionnaire a scribble sheet – the list is endless. Be aware you will lose subjects for many reasons. Check other research of the same type you intend to do in order to get an idea of what withdrawal numbers you might experience. We can drown in data, but if you think about your organization system now, this will not be difficult. Data is only stored with subjects becoming numbers or letters. All their personal information is shredded after your study is complete. The only information you should keep is an address or email address as to where to send a summary. These files, however, will contain many names, and not just the names of your subjects. This board is made up of faculty and sometimes a director, depending on the size of the university. If you are not familiar with this application, please visit this website where you will find all the paperwork and study it. If your answer is yes to any of these, you will need to go through a review board to have your research approved. The more “yes” answers in this list, the more documentation you will need to explain your research and ensure its adherence to ethical principles. Be very detailed. You must consider your personal safety at all times. Make a list of the possibilities you might face. Sexual harassment and advances from subjects could become more of a problem than you might think. I have personally known about this list above from my colleagues in what happened to them. Researchers tend to get sick, especially if working with children. A common environmental risk with children, and using earphones, is head lice. Debriefing • All research should debrief the subject • Contact details to send summary copies of the finished work, inclusion of your email address, thank yous, and telling the subject how well they did and how much you appreciate their participation • Always ask if there are any questions Withdrawal from the study • All participants can withdraw from a research study for any reason at any time. • This is a common happening in all research studies; therefore, make sure you have enough subjects to assure the power of your data. • You must report the number of withdrawals from your study and for what reason. Data Storage • All data should be securely stored at your university after your research study is complete; • Any and all names should be shredded; Only letters or numbers indicating subjects should be stored. • Data is stored, but the sources of the data (like tapes, film, etc., ) should be destroyed. Approval of your research • Your research must be approved by Indiana Tech’s Institutional Review Board, with application for initial review of research using human subjects. • You may also need to add additional explanation, depending on your research and subject pool described Guidelines for Research Proposals for Dissertations • Does it involve humans? • Does it involve vulnerable populations for subjects? • Does it involve persons with disabilities? • Does it involve persons in hospitals, nursing homes/assisted living, social service networks? • Does it involve incarcerated persons or persons on probation? • Does it involve persons engaged in illegal activities, such as drug abuse? • Does it involve sensitive topics, such as illegal acts or private issues? • Does it involve collection of data that cannot be anonymous? • Does it involve veterans? Personal Security • What are your risks and the risks to any of your data collectors? • The list is LONG, but think about the following: sexual harassment; injury traveling or from a participant; false allegations from subject regarding researcher; implicated in illegal activities; infections and environmental risk. I don’t have a lot to add here. You give your first name to the participant – never your last name, address, etc. (The summary results are sent by Indiana Tech, not by you.) Web-based research sounds so easy, but much of it is not trusted. Subjects tend to lie a lot and become someone they are not. And, finally, if you are collecting data at night, and some of you may do that since you are working students, please please please, ladies. Do NOT go to your car at night alone. All your subjects know where you are and could easily wait for you to finish. Much of this you already know, or will get in another upcoming class. However, now is the time to think about it, because ethical problems occur if you do not respect your data. Finally, the dissertation should be bold in this area of Discussion, for you have knowledge to report as the result of all your hard work. However, make sure you have interpreted the findings correctly, and keep the implications to the narrowness of your study. There is time for more exploration by you, and by your research colleagues around the world. This is where you must be clear. You might be surprised how much research is misinterpreted simply because of a lack of clarity in this final chapter of work. When you are thinking about those next questions – remember that good research asks more questions than it answers – do so with much thought and how those questions can be examined through the intellect of an ethical and moral researcher. Personal security • No personal details • Try not to do Web-based research – potential subjects lie a lot • Try to do research during daytime and where there are people • Know where your exits are • Ladies, do not go to your car alone at night after collecting data Respecting the data • Use the correct statistical tests • Design your research so that it has sufficient power and can withstand withdrawals • Report “Trends” if you wish, but define what a “Trend” means • Choose the right graphs and tables for you data The Discussion • Be bold, but make sure that you have a sense of flow to your supporting statements for what this research is telling the public. • Clarity, clarity, clarity – leave nothing to the interpretation of others • Always think about the next questions research can examine in a thoughtful, ethical manner.