Human Practices Resources
Thinking about how your team might approach human practices? Check out some of the resources below to help get you started, many of which have been developed specifically for iGEM teams. You should also look at the ‘how to succeed’ page (which includes tips for teams and more details on medals, awards and competition requirements)) and examples from past teams (some of which have developed and frameworks to help iGEM teams) to get inspired.
As we describe on the how to succeed page,your human practices work can also be a form of human subjects social science research. Resources below can help you get started in designing your approach. iGEM requires that teams must demonstrate their awareness of the relevant institution and country policies around human subjects research and their adherence to them. We encourage you to put this information on your wiki.
Have a resource to contribute?
Please email the executive committee at humanpractices [AT] igem [DOT] org with copies and/or links to material and a short description.
Synenergene collaborated with iGEM teams to explore Responsible Research and Innovation (RRI) and to strengthen their Human Practices work. Check out their tools developed for iGEM teams, including the iGEMer’s Guide to the Future, which can help your team get started with HP.
Responsible Research and Innovation (RRI) Tools is curating a toolkit for understanding the relationship between science, technology and society.
How to choose your iGEM project (keeping Human Practices in mind) is a blog post by Andy Balmer, 2010 Sheffield Team Advisor and 2011 Judge
Resources on Methods of Social Science Research
Similar to doing your synthetic biology research, conducting surveys, focus groups or interviews requires good planning and design so as to ensure that the findings give you an accurate representation of how people would think about, react to and benefit from your research. After setting out what you want to understand (for example, ‘what technical changes would potential users want to have?’ or ’how will local communities think about my research’), you will need to think about sampling strategies, that is, who should you reach out to? Should factors such as gender, age, income or educational backgrounds need to be taken into account so as to establish a more rounded view? Similar to conducting research in the lab, you may also need to think through how surveys or interviews can be best organised. For example, how do you word a question in a jargon-free and neutral way, so that it would not falsely sway the responses in one direction? What may be better asked first and what questions may be better saved toward the end?
To make your human practices more informative and effective, here are lists of resources that can help you get started. You can find more resources at your local libraries and via online databases.
Resources on Ethics
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. While carrying out social research and outreach, UNESCO’s Code of Conduct for Social Science Research should also be observed: http://www.unesco.org/new/fileadmin/MULTIMEDIA/HQ/SHS/pdf/Soc_Sci_Code.pdf
A brief summary of key ethical concerns relating to human practices can be found here: http://www.socialresearchmethods.net/kb/relandval.php
Resources on how to conduct interviews
Harvard University Strategies for Qualitative Interviews Guide: https://sociology.fas.harvard.edu/files/sociology/files/interview_strategies.pdf
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. Online access: http://nsuworks.nova.edu/tqr/vol17/iss42/3 (a step-by-step guide written in accessible language)
Resources on how to organise focus groups
England’s National Health Service’s ‘bite-size guide to Run focus groups’: https://www.england.nhs.uk/wp-content/uploads/2016/07/bitesize-guide-focus-groups.pdf (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 guide on focus groups: https://www.epa.gov/international-cooperation/public-participation-guide-focus-groups
Anderson, C. (2010) Presenting and Evaluating Qualitative Research. American Journal of Pharmaceutical Education, 74(8): 141 Online access: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2987281/ (provides good examples of how to present qualitative data and an Appendix on Checklist for qualitative research)
Resources on how to design a survey
While surveys can provide you with valuable information, they need to be designed, conducted, and analyzed properly in order for them to be valid and to count towards your HP evaluations. A good survey is very hard to do. 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 valid survey if they intend for it to be a part of their project. We suggest reaching out to social science experts in survey design who can help you.
What makes a survey valid? Take a look at the resources below to learn how to conduct a valid and informative survey. We also suggest reaching out to social science experts in survey design who can help you.
Harvard University Program on Survey Research Tip Sheet on Question Wording: https://psr.iq.harvard.edu/files/psr/files/PSRQuestionnaireTipSheet_0.pdf
Jones, T.L., Baxter, M.A.J. & Khanduja, V. (2013) A quick guide to survey research. Annals of The Royal College of Surgeons of England, 95(1): 5–7
Czaja, R. and J. Blair. 2005. Designing Surveys: A Guide to Decisions and Procedures. Thousand Oaks, CA: Pine Forge Press. (A detailed guide specific to designing surveys)
Resources on General Data Protection Regulation (GDPR) Compliance
Consulting experts and the public and incorporating their feedback into your project is a fundamental aspect of Human Practices. It’s informative and fun, but simultaneously imposes responsibilities on your team. Especially since May 2018 the General Data Protection Regulation (GDPR) is enforced by the European Union (EU), which has a global effect. The law gives EU citizens more control over their data. The rules can be quite overwhelming, so in this article we point out five important highlights for your team to take into account and getting you started.
Interviews and surveys are a very effective way to gain invaluable insights for improving the impact of the project. Information from such consultations may be personal data. This is where the GDPR comes into play. The law has specified instructions on how you should handle the data resulting from interactions with residents of the EU, even when you are located outside of the EU. Data which is deemed personal can be basic identity information, such as mentioning a name on your wiki. Email addresses, locations, genetic data and political opinions are also examples of personal data. Basically any information that may be traced back to a specific person is personal.
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. Anyhow complying to the GDPR is a matter of respecting an individual’s privacy.
Five tips to ensure your project is GDPR compliant
1. Ask for consent
Whenever you collect personal data, you need to make sure the subject provides you with consent to manage their data. It is your responsibility to inform the subject about the purpose of the data collection, where you store it, for how long and in which ways you may use it in the future. You may not use the data outside the scope of the consent. Consent forms or asking for consent in an email are an effective way to deal with this obligation.
2. Provide an opt-out option
The GDPR insists that you respect the right to be forgotten, also known as data erasure. EU residents have the right to have their data deleted and stop processing by a third party entirely at any time. Make sure you inform the subject upfront about whom to contact in order to have their data removed.
3. Store personal data safely
As a personal data collector it is your responsibility to store data safely. Technical measures must be in place to manage access to documents such as attendees lists of an event, transcripts of an interview or contact details of sponsors. A practical way of complying is adding an extra layer of protection to your files, especially in case the files are stored on a shared network drive like Dropbox or distributed via email. Most spreadsheet programs have an option for password protection. Otherwise storing files in password protected ZIP archives as another convenient approach.
4. Respect the individual rights to their data
EU residents have the right to obtain confirmation about whether their data is being collected, processed, and if so where it is being processed and for what purposes. You must reply to these request free of charge. Moreover, you must facilitate data portability, meaning that the subject may request a copy of all their personal data you may have in your possession.
5. Set up a notification system in case of a data breach
In case the data gets stolen by hackers, accessed unauthorized in any other way or processed beyond the scope of the consent, you have to notify the subjects and the Information Commissioners Office (ICO) of your institution within 72 hours. Make sure you have set up a procedure to do so in advance, the timeframe does not leave a lot of room for improvisation.
These five tips ensure you have covered the most important aspects of the GDPR. Implementations of the regulation may be country or institution specific. Be sure to check with the ICO or similar department in your institution for full compliance. By doing so you live up to the standards of responsible research both inside and outside of the lab.