Human Practices/Resources

Loading...

Human Practices Resources

On this page you will find resources on: Ethics and Responsible Research, Informed Consent, Surveys, Conducting Interviews, organizing focus groups, Conducting Public Engagement, and General Data Protection Regulation.

Human Practices often involves working with the methods of social science (including policy and market research) or humanities research, which iGEM teams may not be familiar with. Similar to doing your synthetic biology research, conducting focus groups, historical analyses, interviews, surveys, or other research activities requires good planning,design, and sometimes formal institutional approval.

Conducting social science or humanities research

After figuring out what you want to understand (for example, 'what changes would make it easier for potential users to access my project's technology?' or 'how will local communities react to my research?'), you will need to think about methodology. You want to ensure that your findings give you an accurate representation of how people would think about, react to and benefit from your research.

Methodology might include sampling strategy- that is, deciding who you should reach out to. Should factors such as gender, age, income or educational background be taken into account to establish a more rounded view? You may also need to think through how to organize things like surveys and interviews. For example, how do you word a question in a jargon-free and neutral way, so that you don't sway the responses in one direction? Which questions should be asked first, and which should be saved toward the end? And, of course, it's very important that every interaction with people outside of the lab, if it is part of your research, must complies with established rules and norms in research ethics.

These resources are a starting point

To make your human practices more informative, respectful, and effective, be sure to seek out methodological and ethical guidance related to your mode of inquiry. This page provides lists of resources that can help you get started.

This list is not exhaustive; you can find more resources at your local libraries and via online databases. You may also find it useful to have a chat with experienced local researchers about norms in your region regarding ethics and regulatory compliance, carrying out meaningful dialogues with stakeholders, and conducting informative interviews, focus groups or surveys.

Have a resource to contribute?

We’re always looking for tools to help teams! If you have a resource to share, please email humanpractices@igem.org with copies and/or links to material and a short description.

Resources on Ethics and Responsible Research

Research ethics and its regulations vary from country to country. Yet there are some basic principles, such as informed voluntary participation, confidentiality, anonymity and minimising harm, that could be regarded as universal.

• The iGEMer’s Guide to the Future offers your team exercises and frameworks to get your HP work started. The guide was developed during the Synenergene project and is based on the Responsible Research and Innovation (RRI) principles.
• While carrying out social research and outreach, UNESCO’s Code of Conduct for Social Science Research should be observed.
• A brief summary of key ethical concerns relating to human practices can be found on the Web Center for Social Research Methods.
• Responsible Research and Innovation (RRI) Tools is curating a toolkit for understanding the relationship between science, technology and society.

Resources on Informed Consent

Similar to scientific experiments and clinical procedures, social science research requires the researchers to obtain written informed consent prior to data collection (e.g. interviews, surveys, or focus groups). In exceptional cases (e.g. disability, illiteracy, or distant data collection), recorded verbal consent is also acceptable. If you are collecting data from a minor, you will need to obtain consent from their legal guardian(s).

We recommend teams anonymise data when publishing HP work (such as interview excerpts or sample feedback) both on- and offline, unless specific permission from the cited individual to use their name has been obtained.

A valid informed consent sheet consists of two parts, and often needs to be approved by a committee at your institution before you can use it. Part one informs potential participants about the purpose your data collection. It should address the following key points:

1. What information is being collected?
2. Who is collecting it? You will want to provide contact details for your team and institution.
3. How is it collected? (for example, will you record audio of the interview?)
4. Why is it being collected?
5. How will it be used?
6. Who will it be shared with?
7. What measures will be taken to ensure the participants’ privacy and confidentiality?
8. How will participating affect the individuals concerned?

This information must be presented in clear and plain language. In addition, it is highly important to inform the participants that:

1. Their participation is voluntary.
2. They have the right to terminate their participation at any point of the data collection process without any adverse consequences.

Part two of the informed consent sheet is where potential participants sign their consent. Normally this consists of a checklist, which will confirm that:

1. They have had the chance to ask any questions regarding the project.
2. They understand that their participation is voluntary and that they could terminate their contribution at any time without consequences.
3. They agree to participate in the study and (if applicable) they agree to be recorded.

Different institutions have their own criteria on how informed consent should be sought. Please check your own institution for specific instructions about and approved formats of informed consent.

Resources on Surveys

While surveys can provide you with valuable information, they need to be designed, conducted, and analyzed properly in order for them to be legitimate and to count towards your HP evaluations. It’s often challenging to conduct a good survey. Surveys are a form of experiment, and like any experiment, they can be designed and implemented poorly. A poorly designed survey will give you ambiguous results, or worse, will bias your responses. As a result, teams should dedicate significant time to understanding how to conduct a legitimate survey if they intend for it to be a part of their project.

What makes a survey valid and informative? Take a look at the resources below to learn how to conduct a scientific and legitimate survey. We also suggest reaching out to social science experts in survey design who can help you.

• Survey Says? - Explore how the U.S. National Science Foundation conducts and supports survey research
• Best Practices for Survey Research
• Czaja, R. and J. Blair. 2005. Designing Surveys: A Guide to Decisions and Procedures. Thousand Oaks, CA: Pine Forge Press. (A book providing detailed guide specific to designing surveys.)

Resources on Conducting Interviews

If you can ask the right questions, interviews will give you insights that you will not be able to learn from simply reading publications! Here are some useful tips on how to plan a good interview.

• Harvard University provides a resource, Strategies for Qualitative Interviews, that offers advice on writing questions, transcription, and other issues.
• Jacob, S. A., & Furgerson, S. P. (2012). Writing Interview Protocols and Conducting Interviews: Tips for Students New to the Field of Qualitative Research. The Qualitative Report, 17(42), 1-10. (A step-by-step guide written in accessible language.)

Resources on organizing focus groups

Similar to interviews, organising focus groups is a valuable way to learn about the actual thinking process of stakeholders. In addition to informing you ‘what’ people think, focus groups help you understand ‘how’ people come to that conclusion and under what conditions. Unlike interviews, focus groups allow you to bring together individuals with diverse views or background and to see their differentiated reactions in hypothetical scenarios (what social scientists call ‘vignettes’). Focus groups are good way to collect a bulk of individual response at once and are particularly informative if your goal is to understand how people negotiate or how consensus is reached.

• England’s National Health Service’s A bite-size guide to: Running Focus Groups for Patient and Public Engagement. (While this guide was originally written for patient research, the practical steps enclosed can be applied to focus groups on various topics).
• US Environmental Protection Agency’s Public Participation Guide: Focus Groups
• Anderson, C. (2010) Presenting and Evaluating Qualitative Research. American Journal of Pharmaceutical Education, 74(8): 141. (This provides good examples of how to present qualitative data and an Appendix with a checklist for qualitative research.)

Resources on Conducting Public Engagement

We encourage all teams to integrate their Human Practice work into their research. This naturally requires ‘public engagement’. Whereas ‘educating’ the public refers to a one-way process, in which the goal is for researchers (e.g. you and your team) to inform and explain certain aspects of synthetic biology and/or your projects to relevant publics, ‘engaging’ with the public entails a two-way process, involving interaction with and listening to people outside of your immediate lab.

The goal is to generate mutual understanding and mutual benefit. To put it in another way, engaging with the public not only means letting the public know what you are doing, but also requires you to understand what relevant publics’ needs and concerns are, and try to incorporate these valuable insights into your research design. To have a ‘two way’ dialogue often necessitates that public engagement not being a one-off event. Rather it may require you to stay in regular contact with relevant stakeholders throughout your project to acquire periodical feedback and suggestions. Survey, interviews and focus groups can all be part of public engagement process but public outreach can also take on more innovative approaches (e.g., art, social media, podcasts). It’s both about educating/informing the public and about learning from the public.

• Building With Biology provides digital kits to help facilitate and prototype public engagement. You can read about iGEM teams’ experiences using and adapting these tools on their blog.
• Tips from UK’s National Coordination Centre for Public Engagement on how to engage with policy makers, young people, and how to understand your target audience in general.
• Oxford University’s video on how to plan high quality public engagement with research.

General Data Protection Regulation (GDPR) Compliance

A member of the Human Practices committee, Pieter van Boheemen, wrote up a guide entitled ‘ Five tips to ensure your project is GDPR compliant’.

Since May 2018 the General Data Protection Regulation (GDPR) is enforced by the European Union (EU), which has a global effect. This law gives EU citizens more control over their data. You may find that GDPR requirements largely mirror a general norm of good practice in research data protection in different regions. However, it is important to highlight that the GDPR is wider in scope. You should familiarise yourself with the GDPR if you are conducting Human Practices work relating to citizens of the EU. Serious violations of the GDPR may lead to penalties up to 20 million euro or 4% of annual turnover of your institute, whichever is higher.

The Scope of GDPR

The GDPR applies to ‘personal data’ and ‘special category personal data’.

Personal data is data about living people from which they can be identified, either directly or indirectly, Examples of personal data include name, location data, an online identifier, or to one or more factors specific to the physical, physiological, genetic, mental, economic, cultural or social identity of that person. We want to draw your attention to the fact that personal data that has been ‘pseudonymised’ can fall within the scope of the GDPR depending on how difficult it is to attribute the pseudonym to a particular individual.

Special category personal data refers to sensitive personal data revealing racial or ethnic origin, political opinions, religious or philosophical beliefs, or trade union membership, and the processing of genetic data, biometric data for the purpose of uniquely identifying a person, data concerning health or other biological characteristics.

The GDPR prescribes 7 principles relating to processing of personal data.

1. Lawfulness, fairness and transparency: Data should be processed lawfully, fairly and with the data subject’s (e.g. your interviewees’ or survey participants’) full knowledge and consent (Please read the Informed Consent section).
2. Purpose limitation: Data should be collected for specified, explicit and legitimate purposes and only used for these purposes.
3. Data minimisation: Data should be adequate, relevant and limited to what is necessary in relation to the purposes of your project.
4. Accuracy: Data should be accurate and, where necessary, kept up to date; Inaccurate data, once detected, should be erased or rectified without delay.
5. Storage limitation: Data you collected can be stored for a period after the Jamboree to allow traceability (e.g. we recommend no longer than 6 months), after which personal data should be safely destroyed or deleted.
6. Integrity and confidentiality: Data should be processed in a manner that ensures appropriate security of the personal data. For example, data collected from interviews or focus groups studies should be stored in a password protected computer which protect against unauthorised or unlawful access. Appropriate measures, such as password-protected backup drive should also be applied to protect against accidental loss, destruction or damage.
7. Accountability: This principle requires you to take responsibility for what you do with personal data and how you comply with the other principles. You must have appropriate measures and records (e.g. signed informed consent) in place to demonstrate your compliance.

Special category personal data: In addition to the above 7 principles, if you are collecting and processing special category personal data, extra oversight is required to ensure the necessity and legitimacy of your planned data collection and that all data will be properly protected. To demonstrate your compliance, you will need to have the following:

• Institutional Research Ethics Committee review and approval
• Data minimisation and minimisation of recruitment numbers
• Anonymisation and other technical safeguards against accidental disclosure and loss or corruption of research data
• Institutional Research Ethics Committee review and approval

Depending on the nature of sensitive data you collect, you may also need additional governance checks (including Health Research Authority assessment for health research). While we recognize that not all iGEM teams have institutional resources to assist them in navigating GDPR issues, we recommend consulting institutional administration whenever possible.

iGEM Foundation

The International Genetically Engineered Machine (iGEM) Foundation is an independent, non-profit organization dedicated to the advancement of synthetic biology, education and competition, and the development of an open community and collaboration. Visit us at igem.org

hq AT igem DOT org

27 Drydock Avenue
Suite 27E-230
Boston, MA 02210

+1.617.500.3106