Research (P2) - Catrin Davies

In this assignment, I will be discussing the ethical issues relating to research in health and social care.

Ethical principles in research The ethics written are statements which reflect our morals of society. These morals are seen as unwritten codes which exist in society determining what is acceptable or unacceptable in our society. During research, these morals are written regulations which are placed in order to ensure that individuals taking part in the research are treated how they should be treated. Codes of Conduct, or practise for health and social care professionals, do not explicitly include research but the underlying principles of professional practise would be consistent with expectations for ethical research (Mary Whitehouse:Health&Social Care, 2010). The ethical principles that underpins all research include protecting individuals, ensuring that individuals only participate voluntarily and ensuring that any personal information is kept confidential.

What morals exist in research? The morals that exist in research are protecting each individual including humans and animals. Also that the individual has given consent to participate in the research project. Ensuring that any personal information is kept confidential, and that nobody from the public can enter or see that piece of personal information. Also, stipulating that the plan for any research project is subjected to independent scrutiny by experts. Although codes of ethics are written, they’re not rules but simply to set boundaries of what is and what isn’t acceptable when conducting research. The four ethical principles in research are:
1. Protecting individuals from harm
2. Informed consent
3. Confidentiality
4. Ethical approval
These four principles must be kept as a main priority during research to protect people from harm. Other principles such as making sure people who talk a different language understand by using a translator and if children are used, that the researchers get consent from their guardian. As well, the participants have the right to withdraw from the research at any time, which should be made clear to them.

Protecting others from harm Researchers should never cause harm, but this should be considered in the context of the research being undertaken. For example, participants’ rights and feelings should be considered when planning the project and collecting the data from the individuals. It might be inappropriate for a researcher to cause a patient with mental illness to become very distressed when being asked questions about their mental health. However, if tests for an anti-cancer drug causes a patient’s hair to drop out, then this might be seen as acceptable harm under the principle of beneficence, if the drug destroys the cancerous growth and the patient survives the cancer (Mary Whitehouse:Health&Social Care, 2010).

Informed consent
Getting informed consent means telling participants how their contribution will advance the research. They should receive all the information they need before agreeing to take part. Information such as, the overall purpose of the research, what is expected of them as participants if they take part in the research, what, if any, risks are involved with participating e.g. possible side-effects, how severe they could be, how will the data they give contribute in the research, and the entitlement to withdraw from the research at any time. Participants should be told about their rights, that they could, for example, withdraw from the research whilst it is in progress or have their own data withdrawn from any report of the study. Participants should be free to use personal judgement about whether to participate according to their own perception of the risks associated with participation. (Mary Whitehouse:Health&Social Care, 2010).

Required information they need The participants must all know the overall purpose of the research, and what’s expected of them if they take part in the research. What are the risks, if there are any from participating, how data might generate from participation will contribute to the research? They should also get an entitlement to be able to withdraw from the research at any time.

Confidentiality Confidentiality should be ensured by all researchers that the data given from participate cannot be indenified or traced back to specific individuals. The researcher needs to establish appropriate systems to ensure confidentiality and prevent data about individuals being accessed by unauthorised people. This can be done by designing systems for collecting and processing the data that do not reveal the identity of the participant. Each researcher should put in place the correct measures to ensure this does not happen. Using reference numbers rather than the participant’s names would help this process and maintain anonymity. Maintaining anonymity is an important protection for participants. It’s also important to maintain the integrity of the study because it helps reduce the risk of bias.(Mary Whitehouse:Health&Social Care, 2010).

Ethical approval All research carried out in the NHS, care settings, the community or in university departments, must have ethical approval, this is done by a research ethics committee which is a panel of individuals who will evaluate each proposal. The research must not start before the approval date has been received. It could take months to get a research project approved within the NHS.( Mary Whitehouse:Health&Social Care, 2010). Organisations such as the NHS, charities and university departments have formal procedures for the ethical approval process. Each researcher submits a specially designed form to present the relevant information about the research project to the ethical committee to decide whether it can take place or not.
Ethical issues and research The ethical codes for research are only guidelines, not legislations. These boundaries set by these codes can be extended or reduced especially during scientific research including animal testing and human testing. Over time, the boundaries of knowledge are continually extended by research, particularly in science. Society’s understanding of what is acceptable is base on existing knowledge that they have. Research that is breaking through existing boundaries of knowledge, into the unfamiliar, often creates ethical dilemmas.

Dilemmas Ethical dilemma can be created by research extended through existing boundaries into the unfamiliar. Overtime boundaries are extended by research and society’s understanding of what is acceptable is based on existing knowledge. Examples of dilemmas relating to research are, using stem cells in research to better understand certain diseases, and, investigating genetically modified crops as a way of increasing food production to support increases in the human population.( Mary Whitehouse:Health&Social Care, 2010). Dilemmas like these make news headlines because they affect our society. A resolution of the dilemmas may involve changes in the law and in the interpretation of the ethical codes that govern research.

Human Rights Everybody has a right to life, to be free from torture or degrading treatment. Nobody should be discriminated and their privacy should be protected and respected. All researchers must protect these rights. Stem cells are retrieved from embryos that are a few days old, and it is this that creates the ethical dilemma in relation to research using this type of tissue. (Mary Whitehouse:Health&Social Care, 2010).

Role of the media The media has powerful influences on everybody. They over-exaggerate on everything and are usually bias to one thing. It has a very influential position in/on society especially when looking are its influences on the public’s opinion. For example, the media were very influential in publicising the contents of the 1998 research report of MMR and autism. In 2002, the media publicised destruction by protestors against experiments in which genetically modified crops were being grown in fields to investigate any potential side effects on the environment. This research was abandoned due to its impossibility to protect the research sites. (Mary Whitehouse:Health&Social Care, 2010). Also, the Thalidomide case led to major changes in the way new drugs are tested before being prescribed, this can prove how powerful and influential the media can be, to be able to change laws like this one.

Use and misuse of data Researchers have a job, not only to protect participants from harm but also to ensure that the project is carried out with integrity. They should always carefully consider the methods they use, ensure the accuracy of their data, and ensure the accuracy of their results and analysis. It is important that researchers design the project with care and select methods that are appropriate for the purpose of the research. An incorrect methodology reduces the validity of the research finding, lessens the usefulness of the research and makes the participants’ contributions undervalued. (Mary Whitehouse:Health&Social Care, 2010).

Authenticity By doing research work, the aims of the researchers are to add new knowledge and understanding through either generating new data or by giving the same knowledge in a different way. Research is based on the principle that the researcher is a neutral observer and does not alter observations made of the research work done. But, due to pressures on a researcher, such as the need to produce results by a deadline or wanting to gain a reputation for a rise in his/hers career, there may be temptation to change the results to make them seem better than the results that were actually recorded. (Mary Whitehouse:Health&Social Care, 2010). This is unethical and can have serious consequences for the researcher responsible, such as the loss of his/hers job.

Validity Validity usually depends on what claims are made about a piece of research and how well the claims are supported by the research done. Many different factors can affect the validity of research, such as; the methods used to conduct the research should be appropriate for the purpose of the research. This could mean, underlying premises of the methods, the accuracy of the equipment used to make measurements, whether any tests for reliability of the research instruments used were carried out, the care with which the conditions of the research were carried out, how the results were analysed and any assumptions that were made doing this. The presentation of the findings, for example what arguments are used to explain the relationship between the results and the conclusions, or bias in the arguments presented and over emphasising others. Also, the conclusion should be a discussion on the results. (Mary Whitehouse:Health&Social Care, 2010). Conclusions that have been evaluated against evidence from other sources apart from that being reported have grater validity than those that are not evaluated against existing knowledge and understanding of the subject.

Reliability Reliability is about the extent to which the research can be repeated, by doing pilot studies to compare research can boosts it’s trustworthy to users of that information given from the research. A reliable research is when it can be repeated by another researcher using the exact same methods, and produces the same results. This shows its reliability for the public or colleagues to use in their research project. Most researchers often test the reliability of equipment used in their experiments before they conduct a long, complex series of tests. In a lab, an experiment may have been repeated many times. Even if they use the exact participants, the circumstances could not be exactly the same because participants’ second contributions could be influenced by their previous experiences of participating. Apart from conducting a pilot study, social science researchers make sure they keep as many aspects of the research methodology the same.( Mary Whitehouse:Health&Social Care, 2010).

Legislation The Human Rights Act 1998 makes clear statements about the rights of individuals. Statements such as, the right to life, the right to freedom from torture or degrading treatment the right to privacy and family life, the right to freedom of expression. All research should respect theses rights. (Human Rights Act 1998) The Data Protection Act means that if information is held, it can only be used for specific announced purposes and the information can only be held for a certain period of time. For a researcher, this means that under the Data Protection Act, only data relevant to the project can be collected. It would be illegal to change the information so that it’s not accurate and all information gathered should be kept securely and strictly confidential. (Mary Whitehouse:Health&Social Care, 2010). After the data is analysed, each individual’s personal records would need to be destroyed and the individual data cannot be taken outside of the UK unless it is protected (e.g. encrypted)

In conclusion, the ethical issues relating to research in health and social care always need to be considered before any researcher carries out a research project that contains individual personal information about anybody.

Reference
Human Rights Act 1998: http://www.legislation.gov.uk/ukpga/1998/42/section/3 (11/10/13)
Beryl Stretch, Health&Social Care Book 1 Level 3, 2010, Pearson