Ethical Guidelines

1.0 Introduction

It is essential that all researchers, volunteers and participants at AfterlifeData.com understand the ethical issues and implications of research and act accordingly. Therefore, this document is intended to be advisory rather than prescriptive and it aims to help researchers, volunteers and participants avoid ethical dilemmas and difficulties during the research process.

1.2 Ethics or Morals

Ethics (morals) is a familiar part of everyday life as we tend to evaluate the moral characters of others, and think of rules to distinguish between right and wrong, such as the golden rule “do onto others as you would have them do unto you.” However, it can be argued that ‘ethics’ relate to a person’s own private considerations whereas ‘morals’ relate to social matters. The ethical guidelines developed by professional bodies such as the American Psychological Association, The British Psychological and the Association of Social Anthropologists are put in place to inform researchers of the need to protect the interests of participants through:

• Respecting their privacy,
• Protecting the confidentiality of data collection,
• Ensuring voluntary informed consent is obtained, and
• To be aware of the possibility of causing harm or discomfort.

Therefore, protecting the rights and welfare of those individuals that volunteer and agree to take part in research is a basic principle of ethical research.

1.3 Definition of Research Ethics

According to Peach (1995) research ethics “is a kind of applied or practical ethics, meaning that it attempts to resolve not merely general issues but also specific problems that arise in the conduct of research. Its goal is to determine the moral acceptability and the appropriateness of specific conduct and to establish the actions that moral agents ought to take in a particular situation. Research ethics is therefore not merely theoretical. It aims to establish practical moral norms and standards for the conduct of research.”

2.0 Ethical Guidelines for AfterlifeData.com

There are a range of core principles that outline the system of ethical protection that we at AfterlifeData.com adhere to.

2.1 Voluntary Participation

All individuals that agree to take part in research must do so on a voluntary basis only. Participants must not be coerced in any way to participate in a study.

2.2 Participant Information

Participant information is provided to help participants make informed choices about whether or not they want to be involved in the research. All participant information will be written in lay terms and all researchers will ensure that prospective participants understand what the study involves and what they will be asked to do.

In general, participant information will include the following information:

• Title of the project
• The purpose of the study
• Who is conducting the study (name of researcher[s])
• Type of study (e.g., questionnaire and type of questions to be asked)
• Length of time the participants will be required to commit to the study
• The participants right to withdraw from the study at any time
• Confidentially

2.3 Informed Consent

According to Israel and Hay (2006) “informed consent implies two related activities: participants need first to comprehend and second to agree voluntarily to the nature of their research and their role within it.”

One of the most important ethical principles in human research is obtaining informed consent from the prospective participant. Individuals can only make an informed decision about whether or not they want to take part in the study based on their understanding of the research, the purpose, methods to be used, any inconvenience that may be experienced, and how the results will be used and disseminated. All potential research participants will be informed of their right to withdraw from the study at any time, without prejudice.

• Each potential participant will be adequately informed of the aims, methods, anticipated benefits and potential hazards of the research and any discomfort it may entail.
• Any documentation given to potential participants will be comprehensible and there will be an opportunity for them to raise any issues of concern.
• Consent will be required in writing and/or tick box and records of consent will be maintained.
• Potential participants will be informed that they are free to withdraw consent to participation at any time.
• All participants should be volunteers.
• Any inducement offered to participants will be declared and will be in accordance with appropriate guidelines.
• All participants MUST understand and accept the Ethical Guidelines, Participant Information, Terms of Use, Privacy Policy.
• Each participant agrees that by signing up for a session, that they have read and understand all of the guidelines, information, terms and policies above.

2.4 Type of Risk or Harm

All researchers must protect their participants and not put them in a situation where they may be at any risk or harm as a consequence of taking part in the study. Set out below is a list of possible risks or harms:

• Physical (e.g., noise, sleep deprivation)
• Psychological (e.g., emotional, behavioural)
• Sociological (e.g., employability)
• Loss of confidentiality
• Deception

2.5 Confidentially and Anonymity

“In research participants need to be reassured that what they reveal will be treated as ‘private’ (confidentially) and they won’t be identified through research (anonymity)” Boynton, (2005).

For example, in qualitative research were the individual is being interviewed by the researcher or in case study methods the researcher would change the person’s name in order to ensure confidentially and anonymity.

In quantitative research participants would be given an identification number instead of their names being used.

Issues of data security may arise; therefore all data will be stored in a locked cabinet. However, please note that signed consent forms will be stored separately and password protected from the data in a locked cabinet and only accessed by the researchers.

2.6 Data Protection

All research should conform with legislation relating to data protection. Details that would allow individuals to be identified should not be published, or made available, to anybody not involved in the research unless explicit consent is given by the individuals concerned, or such information is already in the public domain.

All reasonable steps should be taken to ensure that confidential details are secure.

As pointed out by the British Sociological Society “the anonymity and privacy of those who participate in the research process should be respected. Personal information concerning research participants should be kept confidential. In some cases it may be necessary to decide whether it is proper or appropriate even to record certain kinds of sensitive information.”

2.7 Deception

Some researchers have argued that consent is not needed if research is carried out in public or concerns public officials, or where the harm caused by the lack of consent might be outweighed by the public benefit gained.

Leading participants to believe that something other than the true independent variable is involved or withholding information such that the reality of the investigative situation is masked or distorted should not occur.

Some deception seems fairly harmless or innocent, for example some participants are told a baby is male when really it is a female and their descriptions of interacting with the baby are compared. However some deceptions are serious and can cause distress.

3.0 Six Key Ethical Principles of the AfterlifeData.com Research

The ethical framework for the AfterlifeData.com research is based on the following six key principles:

• All of our research is designed, reviewed and undertaken to ensure integrity and quality at all times.
• All of our research staff (paid or volunteer) and those that participate in our studies are informed about the purpose, methods and intended possible uses of the research (e.g.: published in the scientific press, the findings presented at conferences, or included in our newsletters), what their participation involves and any risks, if there are any risks, involved.
• All confidentiality of information provided by our participants and their anonymity will always be respected, unless otherwise agreed between us and the participant.
• All participation in our research is on a voluntary basis and free from coercion.
• Any harm to participants will always be avoided to the best of our ability.
• The independence of our research will always be made transparent and clear as well as any conflicts of interest or partiality explicit.
• Some parts of the research may be video/audio recorded and made available to each participant in a group. We do not have control over how the participants use these recordings. However we do notify each participant that the recordings should not be copied or put on display and we expect participants to respect that.

4.0 Data Requests

Researchers outside of AfterlifeData.com are welcome to submit proposals for access to the data for specific research hypotheses. All researchers will be asked to complete a ‘Data Request Form’ and the request will be considered by the AfterlifeData.com team.

All participants will be coded to protect privacy.

5.0 References

Boyton, P. M. (2005). The Research Companion: A Practical Guide for the Social and Health Sciences. Psychology Press, Taylor and Francis Group.

Israel and Hay (2006). Research Ethics for Social Scientists. Sage Publications Ltd.

Kimmel, A.J. (2007). Ethical Issues in Behavioural Research: Basic and Applied Perspectives. Second Edition. Blackwell Publishing Ltd.

Peach, Lucianda (1995) “An Introduction to Ethical Theory,” Research Ethics: Cases and Materials, Editor Penslar, Robin Levin, Bloomington Indianan University Press.

Smyth, M and Williamson, E. (2004). Researchers and Their Subjects: Ethics, Power, Knowledge and Consent. Policy Press.

6.0 Professional Bodies

American Psychological Society: Ethical Principles of Psychologists and Code of Conduct

British Psychological Society: Code of Ethics and Conduct

British Sociological Association: Statement of Ethical Practice for the British Psychological Association