Festival for Genomics and Biodata in Boston, MA — Event Recap & Considerations for Our Fields
Written October 9, 2023. Copied to this website May 24, 2024.
This past week I was lucky to participate in the Festival for Genomics and Biodata (a free conference for graduate students) at the Boston Convention and Exhibition Center (BCEC). It was truly an incredible opportunity that gave me a moment to pause and consider new approaches to our scientific questions as well as ethical implications for our work. I hope to provide a short summary of some highlights and takeaways from the event below.
Overview of Festival for Genomics & Biodata: The conference is unlike any I’ve attended. The size of the conference was on the smaller side (2k registrants), which was actually very refreshing and much easier to navigate. The conference was excellently organized; however, like many conferences, there truly was not enough time in the day to attend every talk, workshop, or opportunity present. Seven stages were built in the BCEC Hall C to accommodate many speakers and panelists simultaneously over the course of two days. Within every partitioned stage, chairs in the audience were equipped with Bluetooth headphones placed in each seat. These headphones were color-coded to their appropriate stage and enabled speakers to give talks adjacent to one another without noise competition. In addition, there was a pop-up café offering meals, free smoothie stations, a “genome dome” for workshops on single-cell sequencing and multi-‘omics, and many exhibition booths (50+) from companies all over the world to share information about their latest products, services, and innovations. There are currently two festivals annually—one in the UK and one in the USA.
The lounge area for attendees to rest, eat and talk. Pretty fun to see people in slacks and business attire on bean bags! 🙂
Advantages of Smaller Conferences: One advantage of having a smaller conference is the opportunity to network and connect with folks from all over the world, including the amazing speakers present at the event. There were many attendees from industry, academia, outreach groups, healthcare, consulting groups, startups and other biotech companies from the UK, Canada, South Korea, the Netherlands and the U.S. I loved seeing the talks on multi ‘omics integration, new software in the field, improvements to various sequencing technologies and their potential for creating biotherapeutics, and the many ethics panels which included critical conversations about our field.
Seeing so many folks who were consultants, scientists, academics, students at every career stage, professors, sales associates, clinicians, software engineers, outreach enthusiasts, CEOs, etc also gave me a lot of hope about the many career options available for people interested in a career in science and/or bioinformatics. After the presentations, it was great being able to talk in a small group with speakers and students. One speaker, Dr. Manolis Kellis, greeted students enthusiastically and took photos with us and emailed them to us right away (see below!) His interest in sex differences in neurodegeneration excited me and opened up doors for collaboration. While this may be possible at a larger conference too, I enjoy the feel of a smaller conference where it can be easier to meet people and maintain contact afterwards.
Dr. Kellis hangs out with scholars from all over the country after an incredible talk with beautiful data.
Resources, Programs, & Organizations to Explore: For one, I am very excited to try out a few new packages like ScISOrSeq, a package developed by Anoushka Joglekar and colleagues to analyze differential isoform expression in single cells. They presented beautiful data and this is absolutely something I will be using in my research moving forward! I was also excited to meet Gillian McNeil and Dr. Marnie Gelbart from the Personal Genetics Education Project. Their incredible work aims to “bring conversations about genetic advances outside of the halls of research labs” and rebuild trust in science with the community, especially communities who have historically had their trust abused by science. They share online curriculum/resources free for people to integrate into their own teaching and/or outreach materials.
There was also discussion about the “All of Us Research Program” which is “an ambitious effort to gather health data from one million or more people living in the United States to accelerate research that may improve health.” A few faculty also mentioned that they were recruiting PhDs to their labs, notably Dr. Orna Issler from Icahn school of medicine and Dr. Yue Feng from Emory University. They both gave incredible talks about the role of lncRNAs in mood in women and lncRNAs in neuropsychiatric diseases, respectively.
I was also very grateful to meet Dr. Alice Popejoy, who co-authored the article “Genomics is Failing on Diversity” highlighting how many of the participants in GWAS studies are of European or Asian descent, and how we are very likely creating therapies that will not be effective and safe for everyone. Additionally, I loved meeting Dr. Shannon Muir, who is the Chief of Staff for the Latino Cancer Institute and whose work lies at the intersection of health equity and precision medicine. So many of these fantastic scientists also have/have had careers in policy work and it was a treat to hear about their experiences and where their work is taking them. I was also relieved to hear that conversations were being had about the importance of acknowledging “Latine” as an ethnicity, not a racial group, and the need to change systems which disproportionately target Black and/or Native people in the Latine community too.
A beautiful afternoon in downtown Boston, MA.
Racial Diversity & Ethical Concerns in Genomics: While attending any scientific conference, I am always aware of the fact that the majority of participants and speakers in my field are racially white and/or Asian, lighter skinned, cisgender, able bodied, etc. While no community is a monolith, and every racial category is fabricated for power and racist systems, it’s forever amazing how a community that is 16% of the country is less than 1% of my field. I also wondered how many attendees or speakers were native to the lands we currently occupy as well?
This is important considering the ways Black and/or Native patients–especially those facing multiple axes of oppression–are disproportionately affected by many diseases we study and seek to treat like Alzheimer’s disease, yet clinicians are primarily white (64%) and asian (20.6%). This absolutely informs the types of questions we ask in our work and who we center, include, and/or consider in our work. As Dr. Popejoy notes in her article about the lack of racial diversity within genomics and GWAS data:
“The message being broadcast by the scientific and medical genomics community to the rest of the world is currently a harmful and misleading one: the genomes of European descendants matter the most.”
Dr. Alice Popejoy, “Genomics is Failing on Diversity“.
Additionally, there has not been tremendous progress on diversifying our fields with respect to race; the latest attack on Affirmative Action may worsen this disparity. When focusing on singular identities like “women”, some areas have improved likely because this includes cisgender white women. However the numbers of Black scientists earning a PhD in 2021 in physical/earth sciences remains at 2.1% and in math/computer science are 3.2%. Black people make up ~16% of the country, yet less than 7% of of people with PhDs. This may partially be explained by antiblackness, a distinct and pervasive form of racism and a global economic system, and its interdependency with ableism, gender marginalization, patriarchy and colonialism that disproportionately affect Black and/or Native people on every continent.
For example, multi-generational African American families living under oppressive systems and institutions in the U.S. have been affected by ongoing redlining, Jim Crow and legal segregation which “ended” only 58 years ago, slavery which ended only 158 years ago, school to prison pipelines, excessive policing in predominantly Black regions, negative stereotypes, etc. Antiblackness affects interpersonal interactions as well and can result in chronic stress, vigilance and health impairments; antiblackness exists in every community and person born within racist systems. It is pervasive even within other marginalized communities (e.g., efforts to serve women, ethnic minorities, disabled people, queer people, etc typically center and serve white and/or white adjacent people. This could also be said for other groups, for example homophobia is present within the queer community, etc.) It is so important to acknowledge and understand how and why these systems do not equally affect all people of color in the U.S. Being honest about each community’s specific needs and centering those who are disproportionately affected actually benefits us all! Less than 6% of full time faculty in the US are Black (remember, 16% of the country) and the leaky pipeline remains for Black scholars, especially those who are gender expansive, neuroexpansive (a term specifically coined for Black people), Transgender, queer, descendants of enslaved people, refugees, disabled scholars, etc. In my field of neuroscience, less than 3% of PhD graduates are Black women.
While no racial group is a monolith, Black people have often been monolithized due to (1) not having the privilege of knowing the country of origin for our enslaved and trafficked ancestors; (2) seen as one community despite “Black” as a racial group including multi-generation and first generation African Americans, people from one of 54 African nations like Togo or Sudan, Black Caribbean and West Indian folks, Black Asian descendents of enslaved peoples, and Black Latin American, Mexican, Puerto Rican, Middle Eastern, etc people who descend from enslaved peoples and/or recent immigrants, altogether encompassing thousands of ethnicities.
Afro-Mexicans, or Black Mexicans, who were counted for the first time on the Mexican census in 2020 following the international Black Lives Matter (BLM) uprisings against police brutality and domestic terrorism.
This being said, colorism and white supremacy are global phenomenons and whiteness can be seen as a global construct. There are brown, darker skinned and/or Black people who are also ethnically Asian, Latine, Middle Eastern, etc who also face severe oppression from systems which uphold whiteness globally; centering unambiguously dark-skinned, Native, Black people on a global scale would necessitate the destruction of so many globally unjust systems.
The effects of a homogenous scientific and clinical workforce can be devastating for our most vulnerable and underrepresented racial groups who often have additional marginalized identities. For example, Black birthing people are 3x more likely to die during childbirth than white birthing people in the U.S. and the mortality ratio for Black birthing people is 9x that of white people in states like New York. Approximately 80% of these deaths have been deemed preventable. Additionally, one study found that infant mortality is reduced by half when Black birthing people have a clinician who is also Black. Data on Black Transgender discrimination in the U.S. also highlight how specificity within our data and analysis is critically important (e.g. Black Trans people face much higher rates of violence, homelessness, wealth inequality, etc than non-Black Trans people or cisgender Black people.)
For GWAS studies, we are missing so much information about population-specific differences in the frequencies of certain variants; this might mean that certain drugs will be “safer and more effective in some populations than in others.” Black and/or Native scientists–especially those who are Transgender, Gender Non-Conforming, Disabled, etc– and clinicians are sorely needed in our fields to contribute to science with perspectives, awareness and lenses that are unique and may partially help to alleviate sincere disparities and limitations. Building trust and providing resources equitably (not equally) with communities whose trust has been abused by science/medicine is also critical to incorporate more racially underrepresented populations in our studies, especially patients who have additional axes of marginalization, often resulting in disproportionate susceptibility and vulnerability.
Together, individuals of African and Latin American ancestry, Hispanic people (individuals descended from Spanish-speaking cultures in central or South America living in the United States) and native or indigenous peoples represent less than 4% of all samples analysed. Collectively, these are the most vulnerable and traditionally underserved populations in many of the world’s richest nations.
Dr. Alice Popejoy, “Genomics is Failing on Diversity”
Discussing Disparities as Researchers in Genomics and Multi ‘Omics: There are many harmful implications of racial and social ignorance in our work as scientists and clinicians. For one, when we as scientists and clinicians speak about disparities in our work, we often use passive language that places blame on individual members of a community instead of naming the conditions that gave rise to these disparities. For example, in our fields we may see language like this in scientific papers or presentations:
"We [the researchers] identify obesity as a risk factor in Black communities for xyz disease." This is not only inaccurate and heavily simplified, but it places blame or onus on individual people or communities. Another way to frame this issue more truthfully and holistically in our scientific papers might be:
"We [the researchers] acknowledge that our government legally segregated African Americans as recently as 58 years ago and subjected Black (African American) and Native people to centuries of enslavement and/or oppressive conditions that created food deserts and malnutrition, under-funded schools, redlined districts that affected who could move freely, purchase homes, get credit or pursue education, and the ongoing domestic terrorism of Black and/or Native people carried out by the government, policing and civilians; this in turn has produced multi-generational health and wealth disparities and likely epigenetic changes that can't exclusively be solved with genetics and genomics; it will necessitate restructuring our society as a whole to eliminate disparities due to race, class, gender, sexuality, disability, etc that disproportionately affect Black and/or Native communities but affect every single person in the USA and beyond.") I am deeply concerned how many scientists don’t feel that this is their responsibility to understand, learn, think critically about, directly name, and/or help to dismantle these systems too; failing to all do our part may fuel more research tainted with eugenics that seeks to label some communities as inherently different/flawed rather than subjected to far more oppressive systems and systemic, institutional, and interpersonal violence historically. As my dear friend Laura often says, we must be “soft on people, tough on systems.” The behavior I see is often a reflection of the environments we are in, the systems (e.g., racial capitalism) that drive culture, and the limited information people are given about our collective history and present.
Considering Genomics & Drug Discovery: who is our research really serving? Another subject I grappled with when listening to so many talks about drug discovery is how our science and scientific questions are ultimately guided by billion dollar, for-profit industries and homogenous funding reviewers who favor “prestige” and “meritocracy” in an inherently unjust, unequal society.
For example, in 2022 the eight largest pharmaceutical companies had profits upwards of 10 billion dollars (not revenue, which was in the hundreds of billions, but just profit for ONE YEAR.) Drug discovery is an incredibly lucrative industry that has and will continue to help people in varying capacities. However, I worry that, given the disparities we’ve discussed, this will continually serve people who are predominantly wealthy or financially stable, racially white, etc. Moreover, the focus on creating more drugs for profit is shifting our lens from holistic and/or preventative solutions (e.g., focusing on diet and exercise and reducing barriers to nutrition, restructuring our society to be more just for us all, less carceral, more community resources, more access to nutritious foods, land-back and reparations, equitable approaches to healthcare, redistribution of global wealth, etc) to more reductive solutions that do not consider the necessary integration of science, history, intersecting identities, community voices, collaboration, and agency, and the landscape of our society within and beyond the US.
I wonder what 10 billion dollars annually could do for reparations for Black and Indigenous people (and reparations to countries the US has destabilized, from Vietnam to Palestine), more public transportation and resources for the elderly, free housing, better community programming, funding under-funded schools, incentives to increase exercise and community, accessible and diversified mental health resources, healthcare, gender affirming care, etc. (Side note: the prison industrial complex in the United States is so “massive that its estimated turnover of $74 billion eclipses the GDP of 133 nations.” It is worth asking why so many billions of dollars continue to be invested in institutions that the data continually suggests are not serving individuals or our national community as a whole, and that disproportionately harm and exclude Black and/or Native people. It is also worth asking how this affects our ability to carry out effective and just science. (Mariame Kaba is one of many amazing individuals to follow for learning about abolition.)
While speaking with some fantastic talk show hosts from the UK, we discussed the history of our countries and the history of science which was used to promote eugenics and enslavement, justify the involuntary sterilization of Black and Indigenous women and/or birthing people, furthered militarism, and inhumanely operated on Black people to fuel discoveries in science and healthcare. (If you’ve never read about Henrietta Lacks, Tuskegee experiments, etc please do.)
It makes me wonder about the capacity for truly innovative, exploratory, daring or imaginative science when our funding is incredibly political, reductive and risk averse. Funding agencies are of course influenced by profit, the military, and politics. Our scientific questions we painstakingly craft are ever guided by the interests of those with money and power. The people who so often guide and dictate our science are those with various degrees of privilege. So, how creative and inventive are we truly capable of being within these limitations and structures as they are? How much better could our science and scientific questions be if we were not bound by such rigidity, homogeneity and inequity? Especially with respect to who has the privilege to pursue science as a career, contribute to guiding our field(s), and feel safe and “included” within a horribly unequal ivory tower?
It would be phenomenal, timely and important to discuss these issues through the lens of Black Trans feminism and abolition. This was able to happen somewhat in one-off conversations at the festival and I am so grateful for this. However it is clear that the vast majority of people are not sincerely thinking about these issues in our fields.
A clinician at the event told me that he was antiracist and that his son was “post-racial” and did not care about skin color, but in the same breath mentioned that everyone was too sensitive these days and that he had no hope for the world. While I can see that the intent was not to cause harm, I regretted not speaking my mind; that the impact of those words not only plagued me, but showed me how our systems are not set up in such a way to incentivize education about social and racial justice, community care and/or critical thinking. We truly need a more just society that enables time for reflection, mental and physical health, community, accountability (without promoting more harm or carceral logic), education, etc that will ultimately serve all people and improve how we think about, conduct, and contribute to science.
Fun Takeaways – “Where Is My Mind?” : Like every conference, I try to use these moments to pause, breathe, absorb information like a sponge, and reflect on the past, present and future of my own work. I was extremely excited to learn more about comparative genomics and the possibility of using bioinformatics as a tool to not only learn more about age-related diseases in humans and non-human primates, but also investigate how different species have unique resilience or susceptibility to age-related diseases. I got to dream about the possibility of doing deep sea diving with sperm whales to study their behavior and gene expression to better understand how these incredible creatures live longer and without age-related pathologies observed in humans or non-human primates. Or, survey bats in Ecuador (where my godmother is from!) to study their incredible immune systems. As an ecologist in a past life, it was a full circle moment to consider how elated I would be doing field work with primates and/or whales as another way to better understand susceptibility or resilience to age-related diseases.
Now that I know how coding can be a vehicle for all types of work spanning consulting, academia, industry, wildlife genomics, conservation, and healthcare, I feel more confident and excited about this career path and motivated to ask an array of questions that excite me. It was also timely to begin reading the book “Undrowned: Black Feminist Lessons from Marine Animals.” This book is amazing and makes me think about the ways Afro-Indigenous people have always been scientists and had close relationships with whales and other species, observing and studying them for hundreds of years (and how I can incorporate these perspectives in my thesis.)
Literally my dream to free dive with sperm whales. Definitely getting my diving certification one day regardless if I can use it in my research!
Conclusions (TLDR;) If you’ve stuck around this long, thanks for reading! If you want a quick summary, here are the bullet points:
Small conferences like the Festival of Genomics and Biodata are amazing for networking and keeping up with new technologies and approaches in the field.
Conferences in STEM, especially in my field of neuroscience and/or genomics, continue to be racially homogeneous with respect to conference participants.
Intersectionality is critically important, meaning we must consider the intersections of our identities and center our most marginalized for improved outcomes for everyone. We truly cannot afford to only consider the whitest and lightest people in every community (e.g. white Latino/a/e/x, white LGBTQ+, white disabled, etc.) This has implications for the health and safety of our most marginalized and underrepresented populations and I believe this affects the quality of our science.
Our research isn’t happening in a vacuum; our fields operate within violent systems and are guided primarily by people who have many axes of privilege due to unjust systems and policies. I worry about how this affects our work and ability to serve people who have historically been harmed by science and currently are excluded from participating in science from both the patient and scientist perspective.
I love learning and am obsessed with the ocean, so I’m trying to figure out a way to write grants to play in the ocean and study all types of genomic data from humans, non-human primates, whales and other species that may offer clues to healthy aging.
