Addressing Predatory Research and the Myotonic Dystrophy Community
Predatory research can be difficult to recognize, especially when an opportunity looks professional. As new treatments for myotonic dystrophy (DM) move closer to becoming available, people living with DM and their families may receive more invitations to take part in research activities outside of clinical trials. These invitations may ask you to participate in an interview, advisory panel, survey, or other paid activity about your experience living with or caring for someone with DM.
Many of these research opportunities are legitimate and can help improve treatments, healthcare, and support for the DM community. However, others may not offer the protections our community deserves. Understanding how to recognize potentially predatory research can help you make an informed decision before participating.
Why does ethical oversight matter?
Not all research is reviewed by an independent ethics committee, such as an Institutional Review Board (IRB). An IRB is a group that reviews research to help protect participants’ rights, privacy, and well-being. Without this type of oversight, it may be harder to know:
- How your personal or health information will be collected and stored.
- Who will have access to your information.
- Whether your information could be shared with other companies or used for business purposes.
- What steps are in place to protect your privacy and rights.
Ethical review helps ensure that research is conducted responsibly. It requires researchers to explain the purpose of the study, minimize risks to participants, protect privacy, and clearly say how information will be used. It also helps make sure participants are treated fairly and that the potential benefits of the research outweigh any risks.
What is market research?
Market research is when companies collect information to better understand the people they want to serve or sell to. This can help them learn what people need, what challenges they face, and what kinds of products, services, or programs may be helpful.
However, market research is not the same as clinical or academic research. It often does not require IRB oversight or formal ethical review. That can mean there is less information about how your personal and health information is collected, stored, shared, or used and whether it could be shared with outside companies for business purposes.
Predatory research red flags to watch for
Be careful if an invitation to join a study or research opportunity includes any of these warning signs:
- No company website or clear information about the organization.
- No mention of IRB approval, ethics review, or privacy protections.
- No explanation of how your information will be stored, shared, or protected.
- Refusal to name the company or companies sponsoring the work.
- Messages sent from personal accounts instead of an official company email address.
- Using a social media account, such as Facebook page or profile, instead of an official company website.
These signs do not always mean an opportunity is unsafe or illegitimate. However, they are good reasons to ask more questions before deciding whether to take part.
MDF’s commitment to ethical research
At MDF, we believe the DM community deserves strong protections, including clear information, privacy, and support in making research decisions.
That is why MDF requires an IRB review or a similar ethical review process before we share a research opportunity with our community. Our policy helps support oversight, transparency, and accountability for how participant information is collected, used, and protected.
Learn more about how MDF is supporting DM research.
What you can do
Even if a research opportunity looks professional, it is always okay to ask questions before participating. You have the right to know:
- Who is collecting your information.
- Why they want it.
- How it will be used.
- Who it may be shared with.
If you have questions about predatory research or are ever unsure whether a request is legitimate, please contact MDF before responding. We are happy to help review opportunities and support our community in making informed decisions.
Reach out to MDF via info@myotonic.org or 415-800-7777.
