Why the Folate Controversy Persists: Mapping the biosocial complexities of folate: the relationship between folic acid and anti-seizure medicines
UK only
Research in nutrition has shown the importance of vitamins to health, including the B-vitamin folate. Folate has been known for decades to help prevent birth defects, which is why women who are trying to conceive and woman who are pregnant are advised to take a daily supplement of 400mg of folic acid – the synthetic form of folate. It is also why over 60 countries worldwide have been adding folic acid to foods such as cereals and grains. Concerns, however, have been and continue to be raised about the possible negative health effects of high doses of folic acid. Scientific explanations of folate are also increasingly debated on social media and online forums.
To be involved, contact Mette Kragh-Furbo via m.k.furbo@liverpool.ac.uk.
Expiry date: 30 June 2024
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The purpose of the study is to gain a fuller understanding of why the b-vitamin folate continues to create debate. The aim is not to generate evidence for or against folate, but to generate new knowledge about the tensions and values at stake in the debate on folate. The long-term ambition is to create positive changes in understandings of life with chronic illness and disease that will influence scientific research, policy and priorities.
What will I be asked to do if I take part?
You will be asked to participate in an interview about folate. The interview will last approx. 45-90 minutes and take place at a time and location of mutual convenience. The interview may involve a discussion of sensitive topics. You do not have to answer any questions that you do not want to. If you want the interview stopped, this is not a problem. With your consent, the interview will be audio recorded and transcribed. If you do not wish for the interview to be recorded, detailed notes will be taken instead to provide a record of the conversation. You are welcome to have a copy of your audio file once the interview has been transcribed or notes typed up. You will also be invited to review your transcript and asked if you wish for sections of the interview to be excluded.
Why have I been chosen?
You have been approached because you have been identified as a suitable participant for this study for one of the following reasons:
a scientist/expert with a research interest in b-vitamins; or
a complementary and alternative medicine practitioner or similar with an interest in health and vitamins; or
a policy stakeholder, for example, a patient organisation representative, business or industry association, MP or scientific advisor with an interest in health and vitamins; or
a member of the public with a special interest in folate/folic acid.
About 50 participants will be recruited for the study.
Do I have to take part?
No. It’s completely up to you to decide whether or not you take part. If you do decide to take part, you will be given a copy of this information sheet for your records. You will be asked to complete a participant consent form to show that you understand what taking part involves.
How will my data be collected?
With your consent, the interview will be audio recorded and transcribed. If you do not wish for the interview to be recorded, detailed notes will be taken instead to provide a record of the conversation.
We will also collect personal data including your name, contact details, and location data to be able to arrange and conduct the interview. Your job role will also be collected to be able to group participants into professional categories.
How will my data be stored?
The University will put in place appropriate technical and organisational measures to protect your data. For the purposes of this project, we will store your data using the University’s centralised and secure data storage facility for electronic data, Active DataStore (ADS).
How long will my data be stored for?
Your personal data will be stored for the during of the research project.
Interview transcripts will be kept for a minimum of 10 years upon completion of the project, in line with the University’s Research Data Management Policy.
What measures are in place to protect the security and confidentiality of my data?
Your data will be treated confidentially and shared on a need-to-know basis only. Transcripts will be anonymised and details that can be used to identify you will be removed from them such as names of people and places and instead marked with a code/pseudonym.
Will my data be anonymised?
Yes. We will use pseudonyms instead of real names or any details that could identify you. Anonymised direct quotations may be used in reports, presentations or publications from the study. Your name will not be attached to them.
How will my data be used?
Your personal data will be used to arrange and conduct the interview. Your job role will also be collected to be able to group participants into professional categories.
Interview transcripts will form part of a dataset that will be analysed by the research team.
Who will have access to my data?
Data will be retained and accessible only to the project team at the University of Liverpool for the duration of project.
Will my data be archived for use in other research projects in the future?
Shortly after the project’s completion, the anonymised transcript along with a copy of your signed consent form will be transferred to the UK Data Service where it will be kept indefinite. This is in line with the Research Council’s requirements that encourage the accessibility of research data and the ability of other researchers to review or re-analyse data from publicly funded research.
How will my data be destroyed?
Your personal data will be deleted from University servers upon completion of the research project. Hard copies of any documentation such as consent forms will be shredded upon completion of the project.
Are there any risks in taking part?
Risks of participating in this study are considered low. However, if you have any concerns or experience any distress following participation, you are encouraged to inform the researcher and/or contact the other people specified at the end of this sheet.
What will happen to the results of the study?
Results from the study will be shared with participants as research insights as well as more widely using social media. Results will also be submitted for publication in academic journals.
What will happen if I want to stop taking part?
If you no longer wish to take part, you can withdraw from the study at any time, without explanation. Results up to the period of withdrawal may be used, if you are happy for this to be done. Otherwise you may request that the results are destroyed and no further use is made of them. If results are anonymised, however, they may only be withdrawn prior to anonymisation. The time frame for withdrawal of your data/results, prior to anonymisation, is 1 month.
If you would like to withdraw from the study, you can contact the Principal Investigator Dr. Mette Kragh-Furbo (m.k.furbo@liverpool.ac.uk).
What if I am unhappy or if there is a problem?
If you are unhappy, or if there is a problem, please feel free to let us know by contacting Dr. Mette Kragh-Furbo (m.k.furbo@liverpool.ac.uk) and we will try to help. If you remain unhappy or have a complaint which you feel you cannot come to us with, then you should contact the Research Ethics and Integrity Office at ethics@liv.ac.uk. When contacting the Research Ethics and Integrity Office, please provide details of the name or description of the study (so that it can be identified), the researcher(s) involved, and the details of the complaint you wish to make.
The University strives to maintain the highest standards of rigour in the processing of your data. However, if you have any concerns about the way in which the University processes your personal data, it is important that you are aware of your right to lodge a complaint with the Information Commissioner's Office by calling 0303 123 1113.
Who has reviewed the study?
This study has received approval from the University of Liverpool’s Central University Research Ethics Committee. Reference: 13318. Approval date: 9/11/2023
Who is funding the study?
The study is funded by the Economic and Social Research Council. Project reference: ES/W010607/1.
To be involved, contact Dr, Mette Kragh-Furbo via m.k.furbo@liverpool.ac.uk
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Unfortunately, involvement in this study is not paid. The researcher is very happy to share the project findings with participants and your community, however.