Author: Lucia VidalAs our BioGENE study begins to unfold, we believe it is important for our lab to deepen our understanding of genetic testing. This week in our lab, we watched a video on the disparities in genetic testing and discussed some of those issues. The topics included socioeconomic status, prevalent mistrust, and logistical barriers. Much of what we know about genetics comes from research on predominantly white, Western populations. This skews the data and leads to less accurate diagnoses for people from other ethnic backgrounds.
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Author: Rebecca Revilla For our weekly Inclusion in Neuroscience topic, our lab read Refining Research and Representation of Sexual and Gender Diversity in Neuroscience (Edmiston & Juster, 2022) and watched an interview with Dr. Karen Blair on LGBTQ+ Inclusivity in Research. These resources summarized a history of exclusion and mistreatment of LGBTQ+ individuals in research and presented helpful suggestions for how scientists can conduct LGBTQ+ inclusive research. Additionally, Edmiston and Juster (2022) explained the critical need for research in this area to continue to shift focus toward understanding the “effects of minority stress on the brain and on mental health” as well as the development of related interventions. During our discussion, several themes emerged as particularly relevant to conducting LGBTQ+ inclusive research within our lab.
In the B-RAD Lab, we are interested in understanding human development across the lifespan. This means we are often working with children and adolescents. Edmiston and Juster (2022) provided suggestions for conducting research on LGBTQ+ youths. Specifically, the authors described the care that researchers must take to avoid outing LGBTQ+ youths to their caregivers. This requires thoughtful wording of recruitment materials and consent forms. Our lab found this idea extremely insightful and discussed how we could be more cautious and considerate of our materials. For example, we ask participants to fill out a participant information form that has various demographic fields including options to share pronouns and gender identity. It will be important for our lab to create a specific plan for protecting this information and/or informing potential youth participants about these demographic questions during the assent process. A broad question that emerged for our lab after reviewing the materials is, what is the line between being inclusive and invading privacy? Specifically, when should we ask or not ask for demographic information related to sexual orientation and gender identity? One point posed by a lab member was to only ask for this information if it benefits the participants or will benefit others in study outcomes. Another lab member added to this point by comparing the typical collection of data on outward identities versus inner identities, such as why we would only classify participants using outward identities. Others challenged these ideas by stating that some people do not like to be labeled and questioned whether labeling identities is truly practical or beneficial. Although we did not identify a clear answer to this question, our lab connected this question with the importance of using mixed-method study designs and community-based participatory methods as we work to conduct more inclusive research. Author: Lucia VidalA policy brief is an outline of a problem or topic being researched. Policy briefs are meant to condense information and are written in a format suitable for the general public, particularly those who influence policymaking. They are a way for readers with no background knowledge to easily understand what is being researched and how it can benefit the community.
During our previous lab meeting, we discussed the importance of policy briefs and how they can benefit our lab and our research populations. To begin, our lab discussed the general ways a policy brief could help convey information to the public. For example, we discussed startup programs wanting to receive help from the government. Oftentimes, these programs are trying to convince people in government who are not fully knowledgeable on the topic they are presenting, especially if it is part of a specific field not relevant to their line of work. Our lab analyzed how a policy brief could essentially become the “essay” one could write to better explain the information. Another example mentioned was wanting to place an intervention in a hospital. Although doctors and chiefs of the hospital may understand many of the terms and reasons for wanting to implement the intervention, the managers or business partners of the hospital might not. A policy brief could make the message clear and concise for the reader who may not fully understand the topic. Next, we discussed some ways to make a policy brief better suited for the general public. We expressed the importance of using simple and general terms, being organized (e.g., bullet points), and concisely stating the main goals. Policy briefs are meant to be organized into different sections including the issue, background, approach, and overall results. As discussed during our meeting, we believe these sections should be organized using vocabulary anyone can understand. We also mentioned the use of boldface for more important words or sentences within the policy brief. Using boldface will make the most important ideas stand out. Lastly, we discussed how creating a policy brief could help us better communicate the research our lab does to the public. We discussed how throughout the process of trying to persuade the community to sign up for a study, we often struggle to explain EEG and neurodevelopment research in a way the general population would understand. Through the discussion of policy briefs, we concluded that a policy brief would be a better way to explain what our lab is doing and why individuals would be a good fit for a study. Author: Cailee Nelson, Ph.D. This week in the B-RAD lab’s inclusion in neuroscience discussion, we considered how to bridge neuroscience techniques with core principles from community psychology. Community psychology is a relatively new field that emphasizes examining psychological topics in a context that is outside of the individual. For example, community psychologists might ask: “How do the systems a person exists in influence their psyche and overall well-being?”.
To aid in our discussion, we used this website to better understand the 10 core principles emphasized in community psychology. While several principles stood out to us, we spent a lot of time discussing the core principle of interdisciplinary collaboration. This principle emphasizes involving many different members of the community in research practices. While the lab agreed that it seems like common sense to implement this type of practice, we realized this does not always happen. It was pointed out that researchers should not be “parasites”—only taking information without giving anything back to the community. To understand how we can better do this as neuroscientists, the lab discussed ways to get the community involved in our research (e.g., community outreach events, presenting our findings to the community frequently), appropriately crediting our research participants, and creating teams to help translate and enact change in the community. Finally, the lab addressed why communities may not always trust researchers by discussing well-known, unethical experiments (e.g., the Tuskegee experiment) that had long-lasting, detrimental effects on the communities that were involved. We established that it is the researcher’s duty to build trust by showing up for the community in different ways and to not take advantage of any trust that already exists. As the B-RAD Lab often recruits children to participate in our research, we considered ways we could do this for our participants’ communities and decided that attending different school events like football games, school plays, or band performances might help. Overall, it is clear that researchers interested in understanding human cognition and behavior must consider not only the individual participants but also the different communities they exist in when designing, implementing, and disseminating our research. Author: Maggie JohnsonOne of our interns had an industrial psychology summer internship through which she received data on user experiences. When presenting her data to a group of board members of the sales division, one of the members asked if she could “make the retention numbers say something else.” In response, she gave them a clear no, as that was against her ethical and moral standards. This led her to question how often this is asked of employees and how often data fudging occurs. Many different industries fund research, so we wondered if this research is manipulated to show the companies that fund studies what they want to see. Because of this question, we are cautious to agree with data provided by privately funded studies without digging deeper. As such, we also wondered why people would manipulate their data to begin with.
We discussed the possibility of profit being the biggest motive. An article we read discussing this topic further suggests that many employees agree to edit data to fit what their employers want to see because they felt pressured or there was financial incentive to do so. Another story, however, mentioned a man who edited the background data of a client because they weren’t eligible for certain things, and this change in information allowed his client to get treatment and resources. Considering the pressure some employees may face, we understood why they may choose to fudge data. For example, if someone has a family to support and their job is in jeopardy, and they refuse to manipulate the data in a way that works best for the company, they could lose everything by saying no to the request. In terms of research in general, not in the realm of private funding, there is also the idea of “publish or perish”. In other words, there is a lot of pressure on researchers to publish a lot of articles, especially if they want to be considered for tenure (i.e., permanent employment) at an academic institution. This can be difficult, though, because journals that publish scientific findings tend to only want to publish significant results. So, even if research is being conducted for a full year, if those results are not significant or if your hypothesis does not align with your results, there is a strong chance that the data you’ve been working on won’t get published. In addition, it can be difficult to get funding if you don’t acquire enough preliminary data that shows strong evidence for potential results from a future study. In EEG research, like the research we conduct in this lab, there are a lot of different ways to process or prepare the data to be analyzed. Different filters can be used to process the raw data of the study and different filters can show different results. When reading articles, however, you can not necessarily see what filters a researcher used to achieve their results, nor how many times they may have changed filters to make their results significant. To avoid future data manipulation and “fudging,” we suggested a consistency in protocol in conducting research—especially EEG research. Methods used to process data should be mentioned in grants and preliminary stages of studies to lay down a path to conduct the research without variation. This way, we can understand what was used to process data and ensure data was not manipulated in a way that best suits the researcher. |
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