Underrepresented 30X30 Initiative and Perinatal
Updated: Jan 3
In family history, we often experience what my friend, Jan Gow, from New Zealand calls “serendipity,” Whatever you call it, it is when you make a fortunate discovery by accident. We often attribute them to larger forces at work in the universe. That happened to me about six months ago, related to not just my own family history, but the family tree of humanity.
I had retired early after almost 30 years of working for FamilySearch. They were wonderful years which included many roles, such as establishing the FamilySearch Wiki as a resource for the community, being the director of the world-renowned and amazing Family History Library (now the FamilySearch Library) in Salt Lake City and helping create, for the first time, a virtual Rootstech during the pandemic that rocked the world. My husband and I had been traveling full-time in our RV for one year and I was having a blast seeing the country and working on my passion projects, which I never had enough time to do while working. We were loving it.
Then I met some very passionate people and we found we shared passion to have impact for good in the world. So, we started “working” together to make a difference. We decided to form a new social impact non-profit called My Family Forward. I would like to introduce you to My Family Forward and why it mattered so much to me that I am voluntarily working to make it successful and why I think it should matter to all of you.
One of the best ways to introduce you to our new organization is to talk about our logo. You notice that the roots and the branches of the tree are symmetrical. That is because we focus equally on the past roots and the future branches. The roots, our connection to our ancestors and the stories of our past, ground us and nourish the growth of the branches of the tree, our present and future generations. The colorful roots and branches represent the diversity of peoples in the family tree of humanity. Only with all peoples represented is the tree complete and symmetrical. The trunk of the tree is represented as a DNA strand because it is DNA that binds us to our past family and that we pass on to our future family. And it is the power of genetics that leverages heritage and health to improve our future.
Let’s start by talking about the roots of our shared family tree of humanity. Have you ever hit a brick wall in your genealogy research? You know the feeling when you are stuck and can’t discover more about your past. It is frustrating and, for some people, most of their roots lead quickly to brick wall after brick wall. Do you know anyone who has African heritage for example. That experience is usually very full of brick walls. David Rencher, a well-known professional genealogist, shared his thoughts on this issue:
…people who know me know that I’ve done Irish research for years and years and years. And Irish research is considered pretty challenging at times. Well, it’s nothing like doing African American research. That is far more challenging. You’re dealing with a lot of people with given names, no surnames. Literally, DNA is one of the greatest things to help with that underserved population, because of a lack of records and because of a lack of all…other connections that we generally make through the written record.
As David said, DNA is one of the best tools, but due to underrepresentation of those cousins in Africa in existing DNA databases, the results are limited, and so the roots are incomplete and not discoverable. The problem is that the existing databases do not represent the whole world population.
If we compare the DNA sample reference library today with 20 reference books on a bookshelf, 16 of those books would be of those with European heritage, 3 of those books would be for those with the major Asian countries’ heritage, and one very small book would represent everyone else. Africans, Latin Americans, Hispanics, and all native/indigenous peoples globally represent less than 4% of all DNA samples.
Diahan Southard, author of Your DNA Guide–the Book, discussed this issue:
When we talk about building a family tree for humanity, that implies that we are including every kind of humanity from every far corner of the earth. But in reality, most of the work that’s being done in genetics, and even in genetic genealogy, is focused on a very specific part of the world…mostly being focused on people who have European ancestry. So, without representing every population throughout humanity, the tree that we’re building will be disfigured, it will be lopsided, it will be at the very best incomplete. And without that full picture, we just can’t get a really solid understanding of our common connection with each other.
As Diahan said, this underrepresentation issue isn’t on purpose. It is just the way things have evolved with ancestral DNA testing and medical DNA testing. It does mean that once again, many people cannot use DNA as a tool for ancestral research. And, unfortunately, I learned that this disparity can also be the difference between life and death.
Medical research into the genetics of diseases experiences this same underrepresentation problem. Treatments which are developed by using the genetic samples available today could have a harmful effect when applied to the populations which are not represented in the genetic databases. Identification of the genes associated with disease can also be hampered by lack of representation of populations.
To understand this issue better, let’s turn to two medical doctors who are pioneers in the application of genetics to medical research and treatment and who are advisors to My Family Forward.
Dr. Ken Ward, who is a pioneer in the application of family history and genetics to obstetrics and gynecology, explains it this way:
Genetics has become the central science of medicine…We really can now start to individualize care, based on what a person’s blueprint says is going to be most effective for them…But, we still have huge sections of the world where nobody has looked at the genetic variation. And without that we can’t do accurate genealogy. We also can’t do accurate medical research. There was a famous biologist once who said, ‘treasure your exceptions.’ Every human being has some unique characteristics…Many of the genetic diseases where we’ve made giant advances has been because of one Venezuelan family, or one family in the Maldives, or one family in Australia. And by not really opening up the DNA capabilities around the world in every nation, without helping people who are interested to pursue their interests, we’re actually losing out for all of us….It’s a tragedy that so much of the world is underrepresented.
What impact on a community does being added to the world’s understanding of our genetics have? Dr. Lincoln Nadauld, a pioneer in precision medicine for cancer and other diseases, speaks from personal experience about the impact:
I’ve personally been involved in mapping the genomes of a population. We’ve mapped about 150,000 genomes. I cannot overstate how impactful it has been for that population, for those communities, and especially for those individuals. It has literally saved lives. It has driven understanding, and it has promoted education. And that will only grow for subsequent generations.
When I learned that this underrepresentation had negative impact on both heritage and health research, I knew that the world could and should be a better place for everyone. Together, working with communities all over the globe, we can represent more communities in the genetic databases to improve both ancestral and medical research. My Family Forward has made it our mission to correct this. It will take millions and millions of dollars and years of dedicated work. We have the team and the technology, but we need your help.
Our My Family Forward 30×30 initiative will add 30 underrepresented communities to the DNA reference library by the year 2030. We are raising $100M for this initiative. Every little bit helps: please donate now. Our 30×30 initiative will begin with the communities of Chiapas, Mexico’s southernmost state with rolling green mountains, beautiful families, and a large indigenous population. Thanks to members of our team, we have been forming relationships in Chiapas for many years and the community is excited and anxious to begin. Our next partner will be in Ghana. Because Africa is the ultimate origin of humanity, it is home to more genetic diversity than any place on Earth—yet it is vastly underrepresented in the family tree of humanity.
This underrepresentation negatively impacts not only research into the causes and treatments for disease and conditions, but it also negatively impacts a person’s ability to connect to their heritage and how they fit into the broad human family—the family tree of humanity. When one understands their broader family narrative and the stories of their family and how they connect to those stories, they can draw strength and resilience from that. This has been shown to be true by a study done at Emory University which was reported by Bruce Feiler in his New York Times column entitled “This Life: The Stories that Bind Us.” The true learning of this study is that families who have process that help new generations understand the stories of their past through regular family processes produce more resilient children.
Years before this study, Alex Haley, the author of the Roots, stated:
In all of us there is a hunger, marrow-deep, to know our heritage–to know who we are and where we have come from. Without this enriching knowledge, there is a hollow yearning. No matter what our attainments in life, there is still a vacuum, an emptiness, and the most disquieting loneliness.
This connection to our past, our heritage, grounds us and helps us understand that we belong. It is that connection to something bigger than ourselves, that leads to better mental health. And don’t we all want better mental health for our children and grandchildren? With the epidemic of depression and anxiety in our children today, helping all to find that connection will be beneficial to all of humanity and will help continue the growth of healthy new branches on the family tree of humanity.
But there is another threat to even producing new branches of the family tree, or branches without disease.
Years ago, my husband and I were trying to have a family. We wanted children, but month after month and year after year, it did not happen. We turned to the medical world for help, but after spending a lot of money and going through very difficult treatments, we still did not have success. The interesting thing is that our doctors said that there was no medical reason why we didn’t conceive. So, we came to the realization that our family tree would just stop—we would have no new branches—our tree would die out.
These were difficult times, full of heartache and emotional ups and downs. I would not wish on anyone, but today, over 15% of couples are experiencing infertility and this has been rising and continues to rise.[i] Experts predict that without significant change, most couples will require assistance to reproduce by 2045.[ii] Many will be like us and not be able to conceive even with assistance.
But that is not the only thing that threatens our future branches. I learned that there is, what I call a “perfect storm” of parental and child health conditions, which if not addressed, could cause our trees to end or to wither with disease. These are the sobering facts:
15 % of couples now experience infertility. Most couples will likely need assistance to reproduce by 2045.
The average man has 60% less sperm than his father.[iii]
10% of women experience endometriosis[iv], an incredibly painful condition which also negatively impacts conception.
The United States maternal mortality rate leads all developed countries and is 3x higher than the next developed country.[v]
There are over 364,600 pre-term births in the US in 2020[vi], which leads to many other health, mental health, and behavioral problems for those children.
The average mother has over 300 pollutants in her breast milk.[vii]
Autism now impacts 1 in 30 children.[viii] The rate of Autism is soaring and continues to rise. Twelve years ago in 2010, the rate was 1 in 68.[ix] The societal costs of autism in 2015 were $268 billion and the rising costs could potentially reach $1 Trillion in 2025, which is 3.6% of GDP.[x] For comparison, the US Defense Budget is about 3.1% GDP.[xi]
40% of school-aged children and adolescents have at least one chronic health condition, such as asthma, obesity, and other physical and behavior/learning problems.[xii]
Our children’s skeletal structures are narrowing,[xiii] leading to overbites and underbites and crooked teeth, no room for the wisdom teeth, and mouth breathing due to compressed sinus cavities.
Due to widespread nutrient deficiencies, as a result of dietary changes and modern agriculture, most parents don’t have adequate nutrition to literally build a healthy child. To express our full genetic blueprint, parents must have enough raw materials.
This perfect storm of negative health trends has put the growth of our family tree at serious risk. The additional costs to society of these health trends, particularly autism and other chronic health conditions that require a lifetime of care, put heavy financial burdens on families, but will also likely overwhelm the healthcare system and have negative impact on society. The quality of life for these children, their families, and society in general will be significantly impacted.
Your great, great grandparents likely had over 250 descendants, including you, based on historic birth rates. If current infertility rates continue and do not increase, anyone who has children today will be lucky to have 50 descendants down to their 2x great grandchildren. Given the above-mentioned trends, dozens of those descendants will have autism or other chronic physical, mental, and behavioral conditions. Today’s children, if they can conceive, will have even fewer. This reduction in descendants is partially driven by the choice to have fewer children, but for many others, tragically, real health issues at work take away their choice.
Which means that your grandfather’s laugh, your grandmother’s courage, your mother’s eyes, and your father’s constitution may not get passed onto future generations. Diahan Southard, shared her thoughts on this issue and why this issue is important for us to know about and to take action toward correcting it.
So much of the work that you’re doing in family history is about pushing your family back, and we want to document them—we want to tell their stories. But the real exciting part to me, is thinking about pushing all these stories that you’ve gathered from your ancestors and yourself down into the future. That you’re creating a legacy for your family. So that when they do get lost, when they feel that lack of identity, that you’ve already created for them this narrative of who they are based on their family. But the problem is,…with the rates of infertility, with the different issues and problems that so many kids are facing, depression, anxiety, autism, all of those things are going to contribute to our children, our grandchildren and great grandchildren growing up, and just either not feeling able to have children of their own because of their own health or mental health issues, or wanting desperately to have a child of their own, and not being able to because of their infertility issues. And then what happens to our stories? What happens to our legacy? What happens to our family tree? It will just stop growing. It’ll stop moving forward because we will literally run out of descendants.
The good news is that these trends can be reversed if we work together. Traditional cultures around the world prepare their parents before conception through eating certain nutrient rich foods. Our ancestors had better wisdom around these issues than we do. By learning from and understanding their wisdom, researching what protocols are effective, and providing the needed education, we can reverse these trends through better nutrition and minimizing toxins in preparation for conception.
When I introduced David Rencher, a well-known and skilled genealogist, to these issues and the mission of My Family Forward to address both the needed foundation of diverse genetic sampling and research and education to reverse the negative health trends, he understood the importance. He had personally experienced researching the heritage of ancestors who are part of underrepresented populations in DNA sampling. And, he had family members and friends experiencing these negative health trends. He stated:
If I, as a grandparent can do something that forms a better health scenario for my grandkids. I’m all over that. Right…if people literally understood the implications of what it does for research science, everybody would participate.
Do you know someone who has experienced one of the above issues? I am certain that everyone who is reading this article, either has experienced one of these negative health trends themselves or knows someone who has. It is crazy that they are so commonplace that everyone I have talked to about them, has a personal connection to them. So, I ask you to picture that person in your mind. What would you do for them if you could? What if there was a way to help them? How can you help?
You probably have a DNA file sitting at Ancestry, MyHeritage, or 23andMe, “collecting dust” so to speak. Put that DNA file to work for your own personal benefit and to solve this problem for your family and for others. Click here to purchase your own Personal Genetic Wellness Report. A portion of all purchases goes to fund our first initiative, the My Family Forward 30×30 initiative to grow the DNA reference library globally for the benefit of heritage and health.
This Personal Wellness Genetic Report changed my life. First, I learned that the iron supplement I had taken much of my life, was doing me harm rather than good, so I stop taking it and started taking other nutrients I needed and was genetically predisposed to be low in, such as copper. I learned that I don’t metabolize carbs very well, but I do metabolize protein and fat really well. So, I have adjusted my diet accordingly. I am feeling healthier and have even lost weight with very little effort. I learned many more actionable things to change my health and well-being for good. And you can too, while you also help include others in the genetic reference library of humankind, the family tree of humanity to build a more solid foundation for heritage and health research.
We need volunteers and donations to grow the family tree of humanity with love. Come join us at MyFamilyForward.org and subscribe for updates. Together we can strengthen and grow both the roots and branches of our family tree—the Family Tree of Humanity. Let’s change the world together.
[i] “Infertility: Symptoms, Treatment, Diagnosis,” University of California, Los Angeles, School of Medicine, UCLA Health, (https://www.uclahealth.org/medical-services/obgyn/conditions-treated/infertility : accessed 15 November 2022), first paragraph, sixth sentence.
[ii] Zoë Corbyn, “Interview Shanna Swan: ‘Most Couples May Have to Use Assisted Reproduction by 2045’,” The Observer: Fertility Problems, The Guardian, Sun 28 March 2021 05.00 EDT, (https://www.theguardian.com/society/2021/mar/28/shanna-swan-fertility-reproduction-count-down : accessed 15 November 2022), headline.
[iii] Hagai Levine, Niels Jørgensen, Anderson Martino-Andrade, Jaime Mendiola, Dan Weksler-Derri, Irina Mindlis, Rachel Pinotti, and Shanna H Swan, “Temporal Trends in Sperm Count: A Systematic Review and Meta-Regression Analysis,”(25 July 2017) Human Reproduction Update, Volume 23, Issue 6, November-December 2017, Pages 646–659, (https://academic.oup.com/humupd/article/23/6/646/4035689 : accessed 15 November 2022), abstract, wider Implications, first sentence.
[iv] “Endometriosis,” World Health Organization, 31 March 2021, (https://www.who.int/news-room/fact-sheets/detail/endometriosis : accessed 15 November 2022), key facts, second bullet.
[v] Jamila Taylor, Anna Bernstein, Thomas Waldrop and Vina Smith-Ramakrishnan, “The Worsening U.S. Maternal Health Crisis in Three Graphs,” The Century Foundation, 2 March 2022, (https://tcf.org/content/commentary/worsening-u-s-maternal-health-crisis-three-graphs/ : accessed 15 November 2022), specifically the third paragraph under Maternal Mortality in the U.S. Far Outstrips That of Other Industrialized Nations.; Donna L. Hoyert, “Maternal Mortality Rates in the United States, 2020,” National Center for Health Statistics, CDC Centers for Disease Control and Prevention, 23 February 2022, (https://www.cdc.gov/nchs/data/hestat/maternal-mortality/2020/maternal-mortality-rates-2020.htm : accessed 15 November 2022).
[vi] “Birth Data,” National Vital Statistics System, National Center for Health Statistics, CDC Center for Disease Control and Prevention, 29 August 2022, (https://www.cdc.gov/nchs/nvss/births.htm : accessed 15 November 2022), first and third bullets in Key Birth Statistics box.; “Births: Final Data for 2020,” National Vital Statistics Reports, National Vital Statistics System, volume 70, number 17, February 7 2022, (chrome-extension://efaidnbmnnnibpcajpcglclefindmkaj/https://www.cdc.gov/nchs/data/nvsr/nvsr70/nvsr70-17.pdf: accessed 15 November 2022), Table 20.
[vii] Patricia Cameron and Susanne Smolka, “Toxic Inheritance: More than 300 Pollutants in Breast Milk—Time for a New Chemicals Policy,” Friends of the Earth Europe, 20 June 2012, (https://friendsoftheearth.eu/publication/toxic-inheritance/ : accessed 15 November 2022).
[viii] Hannah Sparks, “One in Every 30 Kids in US has Autism—a 50% Jump from 2017,” New York Post, 5 July 2022, 1:49pm, (https://nypost.com/2022/07/06/1-in-every-30-kids-now-has-autism-a-50-jump-from-2017/ : accessed 15 November 2022).; Li Q, Li Y, Liu B, et al., “Prevalence of Autism Spectrum Disorder Among Children and Adolescents in the United States From 2019 to 2020,” Journal of the American Medical Association JAMA Pediatrics, Volume 176, Issue 9, (2022) : doi:10.1001/jamapediatrics.2022.1846.
[ix] Jon Baio, “Prevalence of Autism Spectrum Disorder Among Children Aged 8 Years — Autism and Developmental Disabilities Monitoring Network, 11 Sites, United States, 2010,” Morbidity and Mortality Weekly Report (MMWR), CDC Centers for Disease Control and Prevention, (https://www.cdc.gov/mmwr/preview/mmwrhtml/ss6302a1.htm : accessed 15 November 2022), Table 2.
[x] Mark Blaxill, Toby Rogers and Cynthia Nevison, “Autism Tsunami: The Impact of Rising Prevalence on the Societal Cost of Autism in the United States,” Journal of Autism and Developmental Disorders, (2022) 52:2627-2643 (https://www.researchgate.net/publication/353328382_Autism_Tsunami_the_Impact_of_Rising_Prevalence_on_the_Societal_Cost_of_Autism_in_the_United_States : accessed 15 November 2022).
[xi] “Defense Spending as a % of Gross Domestic Product (GDP),” U.S. Department of Defense, (https://www.defense.gov/Multimedia/Photos/igphoto/2002099941/ : accessed 15 November 2022).
[xii] “Managing Chronic Health Conditions,” CDC Healthy Schools, CDC Center for Disease Control and Prevention, (https://www.cdc.gov/healthyschools/chronicconditions.htm#:~:text=In%20the%20United%20States%2C%20more,%2C%20and%20behavior%2Flearning%20problems : accessed 15 November 2022), first sentence “In the United States, more than 40% of school-aged children and adolescents have at least one chronic health condition, such as asthma, obesity, other physical conditions, and behavior/learning problems.”
[xiii] Weston A. Price, DDS, Nutrition and Physical Degeneration, 8th ed. (Lemon Grove, CA : Price-Pottenger Nutrition Foundation, 2009).; Felix K. Liao, DDS, Six-Foot Tiger, Three-Foot Cage: Take Charge of Your Health by Taking Charge of Your Mouth, (n.d., n.p., 2017).;