Gedmatch Autosomal DNA Segment Analyzer (ADSA)

Autosomal DNA Segment Analyzer (ADSA)
GEDMATCH Quick Start Guide

ICW means In-Common-With were ever used

To use GEDMATCH with ADSA you must be a Tier 1 GEDMATCH member. That means you must have, at some time, donated at least $10 to GEDMATCH. The GEDMATCH upload process for DNAgedcom.com depends on two Tier 1 tools: Matching Segment Search and Triangulation which you cannot access unless you are a Tier 1 member. And, of course, you must have loaded your raw data to GEDMATCH previously so that it has been tokenized and batch processing is completed.

Some other things to be aware of:

  • Certain fields that are available for Family Tree DNA kits are not presently available for GEDMATCH. These include:

    Match Date

    Predicted Relationship

    Known Relationship

    Relationship Range

    Haplogroups

    Surnames

    Total Shared cM

    Longest Block cM

    So, this means that using these for sorting, selection, highlighting or display purposes may not have the results you wanted because these fields are empty in a GEDMATCH kit.

  • To manage processing load on GEDMATCH’s servers, only the In-Common-With indicators for your top 400 matches are provided by GEDMATCH, so you will only have ICW bricks in the ADSA report for your longer segments. You can manually determine ICWs for other matches by doing a one-to-many report for one of your matches and comparing their list of matches to yours.

  • Generally, there are a lot more segments in a GEDMATCH ADSA report than for Family Tree DNA. This tends to slow down the responsiveness of your browser when viewing the ADSA report. You may wish to increase the minimum segment size in ADSA to 10 cM(Centimorgans)

  • The GEDMATCH tools that are used to gather the data for DNAgedcom exclude very close relatives (eg. siblings, parents, children) to improve processing performance, so you will not see them as matches on your ADSA report for GEDMATCH kits.

  • The X chromosome matches are not presently included in GEDMATCH kits.

To get started, follow these steps.

  1. If you haven’t already done so, go to www.DNAgedcom.com and click on “Register”:

  2. Register for a free account at DNAgedcom.com:

  3. Logon to DNAgedcom.com with your new username and password:

  4. Prepare to upload your GEDMATCH data to DNAgedcom.com:

    You will see a screen with a large, square text input box. Do not enter anything here yet.

  5. Leaving the window above open, create a new browser window or tab and go to the www.gedmatch.com and

    logon

    . Click on “Matching Segment Search” in the Tier 1 tools menu near the bottom of the screen:

  6. Enter your kit number and click “No” on the graphic bar (very important!) and click “Submit”:

  7. Now wait for the report to finish – it will probably take a few minutes. When it is complete it will look something like this:

    Select everything on the screen and copy it to the clipboard. In

    Windows

    you can do this using

    ctrl-a

    followed by ctrl-c. On a

    Mac

    you can use command-a and command-c. You may have to wait a little while for the copy to complete. There is a lot of data there to copy. (If you don’t wait long enough, when you paste the information into DNAgedcom you won’t get what you copied. You may see a

    hour-glass

    or spinning beach-ball while the copying is going on.

    Usually

    the copy process doesn’t take more than a minute or two.)

  8. Go to the browser window you have open to DNAgedcom.com. Click

    in

    the square box and paste what you copied into it. On

    Windows

    you can use Ctrl-v or you can use command-v on a Mac.You should see a portion of what you copied like this:

    Click the “Load” button. The load should complete in a few seconds.

  9. Click the Clear button to erase the text-input box again and return to your GEDMATCH browser window. Return to the main GEDMATCH menu again.

  10. Now click on the Triangulation tool.

  11. Enter your GEDMATCH kit number and select the middle radio button (very important!) and click on the “Triangulate” button:

  12. Wait for the report to complete. The Triangulation report may take longer than the Matching Segment Report depending on how many In-Common-With matches you have and the current load on GEDMATCH’s servers. When it finishes there will be 4 rows of asterisks on the screen and the screen will look something like this:

    Once again, select the entire page (ctrl-a or command-a) and copy it to the clipboard (ctrl-c or command-c). Wait for the copy to complete. Then switch back to your DNAgedcom browser window.

  13. Make sure the text-input box in DNAgedcom is empty (use the Clear button if you need to) and then paste the Triangulation report into the box with ctrl-v or command-v. Then click on the Load button.

  14. When the Load process completes the screen will refresh. You can now go to ADSA by selecting the Autosomal Tools menu and the Autosomal DNA Segment Analyzer option on that menu. Or you can go to this link: http://www.dnagedcom.com/adsa. You will see a screen like this:

  15. Select your kit from the drop-down menu. GEDMATCH kits will start with a letter (A=Ancestry, F=FTDNA, M=23andMe etc.):

  16. Click GET REPORT

  17. If you have Ashkenazi ancestry or are part of an endogamous (interrelated) group you may not be able to generate a report with the default input parameters. Please consult the Tips for People with Ashkenazi Ancestry page before clicking GET REPORT.

For more information about this process, how to interpret your results, or troubleshooting, read the full ADSA manual.

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Finding More DNA Cousins for Free

Finding More DNA Cousins for FREE

July 13, 2017

|

AdaEze Naja Chinyere Njoku

 

Hello Family!

We sure hope you all are doing well.  We know that many of you that have taken the autosomal DNA test at FTDNA.com 23andme.com , Ancestry.com or MyHeritage.com are waiting patiently for that breakthrough of finding an Africa DNA match.  

Some of us are not being so patient.  Logging into the accounts 7 to 10 times daily, yelling at folks because we can’t find that match.  Talking to ourselves AND responding..  Creeping up on your computer from the side, like agent 007….  Acting as if it is hiding that match from you.  It’s OK.  We’ve been there too.  Please read a book or go fishing or something Shuga.  More people are testing.  We have to be patient.  It took some of us over 7 YEARS to get an Africa DNA match.  Oh but when we did!!!! 

 

Now, we are not going to lie to you.  We all know that there is NO GUARANTEE that you will find an Africa DNA match.  Here are some ways to widen the net though.  These helpful options are steps that I have taken myself.  They have proven to be very helpful especially since many people have DNA tested at one company and have elected NOT to test at another.  

There is a place where your DNA raw data can go and meet up with other people’s DNA raw data that tested at different DNA testing companies.   You all can chillax for FREE!!  OK.. Let me clarify…. Its like a meet up for ya raw data.

The goal is to upload your DNA raw data to the websites that you have not tested or to the sites like Gedmatch.com to help you compare shared segments on Chromosomes between you and others that have also uploaded.

Read more: DNAtestedafricans.org

Centimorgans in Genetic Geealogy

Reprinted from the International Society of Genetic Genealogy August 2, 2017. No adjustment was made to this article and is the ISOGG position.

 

In genetic genealogy, a centiMorgan (cM) or map unit (m.u.) is a unit of recombinant frequency which is used to measure genetic distance. It is often used to imply distance along a chromosome, and takes into account how often recombination occurs in a region. A region with few cMs undergoes relatively less recombination. The number of base pairs to which it corresponds varies widely across the genome (different regions of a chromosome have different propensities towards crossover). One centiMorgan corresponds to about 1 million base pairs in humans on average. The centiMorgan is equal to a 1% chance that a marker at one genetic locus on a chromosome will be separated from a marker at a second locus due to crossing over in a single generation.

The genetic genealogy testing companies 23andMeAncestryDNAFamily Tree DNA and MyHeritage DNA use centiMorgans to denote the size of matching DNA segments in autosomal DNA tests. Segments which share a large number of centiMorgans in common are more likely to be of significance and to indicate a common ancestor within a genealogical timeframe.

The centiMorgan was named in honor of geneticist Thomas Hunt Morgan by his student Alfred Henry Sturtevant. Note that the parent unit of the centiMorgan, the Morgan, is rarely used today.

23andMe and Family Tree DNA both use HapMap to infer their centiMorgans.

centiMorgans vs megabases

CentiMorgans are interpolated numbers that take into consideration each area of a chromosome and its propensity to recombine. This means if two cousins share 40 cM on chromosome 1, and two different cousins share 40 cM on chromosome 5, they both can be predicted to share a certain degree of relationship statistically. Megabases vary slightly in different locations so that in the same scenario, if both sets shared 40 Mb pairs, it would be more difficult to ensure they are of a similar degree of relation without further accounting for location, chromosome and other factors.[1]

Ann Turner provides a useful explanation: “I think of the cM as being a unit of ‘effective’ distance. As an analogy, a mile is a fixed quantity (5280 feet), and so are megabases. But the probability that a person can walk a mile in 20 minutes is more fluid. If the terrain is very rough, the “effective” distance of a literal mile might be more like two miles if you’re trying to arrive at a certain time. We’re more interested in the probability that a segment will be passed on intact than the size of the segment in Mb”.[2]

As the cM is an empirical measure, based on recombination events in a particular dataset of parents and offspring, it can vary somewhat from study to study. This set of maps for each chromosome shows that the general shape of the centiMorgan vs megabase curve is similar for two datasets, but the absolute values are not quite the same:

http://web.archive.org/web/20070113005025/http://compgen.rutgers.edu/maps/compare.pdf

cm values per chromosome

The following table compares cM values per chromosome at Family Tree DNAGEDmatch, and 23andMeAncestryDNA uses 3475 as the total cM according to the help screen for confidence level in a DNA match. This presumably excludes the X chromosome.

CM chromosome FTDNA&GEDMatch&23andMe.jpg

Probability of crossover

The following chart shows the estimated probability that a segment will be affected by a crossover. The chart does not take into account some variables such as inversions and different recombination rates for males and females.

Crossover probability centiMorgans.png

Converting centiMorgans into percentages

In order to get an approximate percentage of shared DNA from a Family Tree DNA Family Finder test, take all of the segments above 5 cM, add them together and then divide by 68.

The way the calculation works is that your total genome in cMs with the Family Finder test is 6770 cM. A half-identical match (such as a parent/child) is 3385 cM. This number has to be doubled to represent both the maternal and paternal sides giving a total of 6770 cM. Matt Dexter explains: “The reason the number is not 6770 or 6800, but rather 68, is that it saves an additional step doing the math to convert an answer to percent. For example, 3385 / 6770 = .5 then as a second step, .5 times 100 = 50%. Using 68 to start with saves the added math step. So (3385 / 6800) * 100 is the same thing as 3385 / 68, which results in = 50%.”[3]

Human reference genome

The centiMorgan totals per chromosome are based on the Human Reference Genome. 23andMe and Ancestry DNA use Build 37. Family Tree DNA use Build 37 for matching but Build 36 for segment boundaries in the Chromosome Browser. Raw data files are provided in both formats. Build 37 filled in quite a few gaps, and the number of base pairs in each of the chromosomes was longer in Build 37 as compared to Build 36. Consequently the cM totals per chromosome are lower for Family Finder than they are for 23andMe. GedMatch use Build 36, and convert AncestryDNA and 23andMe data from Build 37 to Build 36 for backward compatibility.

The latest version of the Human Reference Genome, Build 38, was released in December 2013. However, none of the companies have as yet adopted Build 38 and there is a “gentleman’s agreement” in place to stick with Build 37 for the present time.

Further reading

Resources

Help Drive Research Forward for African Americans

23andMe Post

We believe genetics and the study of disease should be for everyone.
All ethnicities. All people.

Help drive research forward for African Americans.

Join now!

Questions: contact study-help@23andMe.com

Why your help is so important.

Less than 5% of research on the genetics of disease includes people of African ancestry. If people with diverse ancestries continue to be underrepresented in genetics research, then we risk missing key medical and other scientific discoveries that could benefit everyone.

If you participate in the African American Sequencing Project, you could help address this disparity. By sharing your genetic data with the scientific community, you can shape the future of genetics research to include people of African descent.

Only a fraction of genetic research studies have included people of African descent.

Popejoy, A. B. & Fullerton, S. M. Nature 538, 161-164 (2016).

See if you’re eligible

To be eligible for this study you must be a 23andMe customer, have consented to 23andMe Research, self identify as African or African American and be at least 18 years old.

How it works

You do not need to provide a new saliva sample — we will use the one you already sent us.

There is no cost to participate.

You consent to share your genetic data.

Enroll and agree to share your de-identified genetic information with researchers approved by the National Institutes of Health (NIH) and qualified research partners of 23andMe.

None of your contact information or answers to 23andMe surveys will be shared.

We will sequence your genome.

If you are selected, we will send your saliva sample, already provided to 23andMe, to a lab for whole genome sequencing. Whole genome sequencing is a more thorough but also more costly review of your genome than that provided by the genotyping analysis used to generate your 23andMe reports. *This is extremely important. The real cost to an individual is about $1200 with most labs. Entire genome sequencing means all of your DNA in your body. I am a member of the Ethnicity Research Group studying and identify the location specific location of African and African-American ancestors and I also participate in the L2 study group, this later group requires identification with a person of African origin. right now these two groups are closed.

For more information on sequencing versus genotyping watch this video or read this article.

We will provide data to researchers around the world.

23andMe will share this sequenced genetic data with researchers by depositing it into a scientific database approved by the NIH. Approved researchers will have access to this data to conduct genetics research.

About this project

In October 2016, 23andMe was awarded a grant by the National Human Genome Research Institute, a major research arm of the National Institutes of Health, to fund the African American Sequencing Project.

This project is part of our broad commitment to diversity in genetics research. Learn more about 23andMe’s Roots into the Future Project.

Privacy and Security

We do not share your genetic information without your explicit authorization. Only you can decide if you would like to participate in this project by authorizing 23andMe to share your information with outside researchers.

Even though you previously consented to participate in 23andMe Research, you will need to read and accept additional consents to participate in this study.

Hi. Have additional questions about the African American Sequencing Project?

If you don’t see your question here, get in touch with us.

  • What does it mean to be a research participant in this project?

  • Why is 23andMe conducting the African American Sequencing Project?

  • Will you share my genetic data with third parties?

  • Do I need to provide a new saliva sample to 23andMe?

  • How will you protect the confidentiality of my data?

  • What is whole genome sequencing? How is this process different from genotyping, the process previously used by 23andMe to analyze the DNA in my saliva sample?

  • How do you select participants for this study?

  • Will I have access to my sequenced data?

  • What am I agreeing to if I accept the consent documents for this project?

How 23andMe identifies your DNA Relatives

Scientific Details

Learn about your DNA Relatives, the diverse group of 23andMe customers who have DNA in common with you. Only individuals who have chosen to participate in DNA Relatives are the subject of this report.

How 23andMe identifies your DNA Relatives

To identify your DNA Relatives, we use an algorithm that finds segments of your DNA that are identical to DNA segments of other 23andMe customers. When these segments are sufficiently long, we infer that they were inherited from a recent common ancestor. These segments are known as “identical by descent,” or IBD. Our algorithm searches for these matches across virtually your entire genome, so we can identify DNA Relatives on any branch of your family tree.

Note: IBD/Half IBD:

The comparison results in this feature displays shared segments of DNA on separate lines representing each chromosome pair, and labels the shared segments as Half IBD, or identical by descent. Because you inherit one half of your DNA from your mother and the other half from your father, IBD segments typically occur on only a single chromosome. Half IBD refers to the amount of the genome in centiMorgans (cM) that contains an IBD segment on either chromosome. The percent DNA shared in DNA Relatives is based on this number.

Your half IBD and shared segments vary based on the closeness of your relationship with the matches with whom you are comparing. Closer relatives will share thousands of cM and many segments in common; more distant relatives may share only one. For some of your shares, if you connected outside of DNA Relatives, you may not share any segments at all.

Every time DNA is passed from one generation to the next, the two chromosomes in each pair are randomly shuffled with each other in a process called recombination. Then, only half of this new DNA — one set of chromosomes — is passed down to each child. The total amount of DNA passed down from an ancestor is cut approximately in half each generation. Through this process, long inherited segments are broken up generation by generation into multiple shorter ones and sometimes lost altogether.

Despite all of this generational shuffling, DNA Relatives is highly sensitive and can pick up matches ranging from siblings and uncles to distant eighth cousins — individuals that share great-great-great-great-great-great-great grandparents with you. It may not always be obvious how you share a connection with someone, but that’s where our DNA Relatives tool comes in. Visit the tool to find out more about your matches and get in touch to learn about your family history.

See our Customer Care pages for more information:

Shared segments between cousins

Inheritance family tree graphic.

A closer look at the matching segment

An example graphic showing a matching segment between you and your cousin.

Sources of information used in this report

The Your DNA Family report provides aggregated summaries of several attributes of your DNA Relatives. The following information sources are used in the report:

Report Section
Source
Close to distant DNA Relatives

Computed IBD results from the DNA Relatives tool.

Locations of your DNA Relatives

Answers to survey questions by your DNA Relatives.

Ancestries of your DNA Relatives

Computed results from the Ancestry Composition report.

Traits and behaviors in your 23andMe DNA Family

Answers to survey questions by your DNA Relatives.

Traits in Your DNA Family

Henrietta Lacks Story NIH

 

 

 

Archives of Maryland
(Biographical Series)

Henrietta Lacks (1920-1951)
MSA SC 3520-16887

Biography:

Despite living a very short life, Henrietta Lacks is one of the most important people in the history of medicine. Lacks’ cells, known as the HeLa cell line, are mysteriously immortal and have been used by scientists and researchers all over the world to study and develop cures for a plethora of diseases. For decades, Lacks and her family were not given any recognition for her contribution to the medical field, but, in recent years, Henrietta Lacks’ legacy has been credited for saving the lives of millions.
Henrietta Lacks was born as Loretta Pleasant in Roanoke, Virginia in August 1920 to Johnny and Eliza Pleasant, both African American. No one is aware when she changed her name to Henrietta from Loretta. Lacks’ mother died when she was only five, and she was then sent to live in Clover, Virginia with her grandfather in a log cabin that was previously the slave quarters on her white great-grandfather’s plantation.1 While slavery was still legal, Lacks’ white great-grandfather took a slave mistress, thus starting Henrietta’s family line of black Lackses.2 When she was old enough, Lacks began farming tobacco on the plantation like the rest of her family.

Lacks gave birth to her first child soon after her fourteenth birthday, and the father of the child was her first cousin, David “Day” Lacks.3 Henrietta and Day named their first son Lawrence and, four years later, Lacks gave birth to her second child and first daughter, Eliza. On April 10, 1941, Henrietta, age 20, married Day, age 25. Soon after their marriage, Day moved to Baltimore to take advantage of the large amount of opportunity in the steel factories during World War II, and Henrietta and the two children soon followed.
While living in Baltimore, Henrietta gave birth to three more children. She “spent her time cooking for Day, the children, and whichever cousins happened to be at her house. She made her famous rice pudding and slow-cooked greens, chitlins, and the vats of spaghetti with meatballs she kept going on the stove for whenever cousins dropped by hungry.”4 One of her friends reflected that “Hennie made life come alive—bein with her was like bein with fun. Hennie just love peoples. She was a person that could really make the good things come out of you.”5 Although Henrietta Lacks held the ability to make the good come out of people, something lethal was growing inside her body. She began telling her family and friends that she had a knot in her womb or that she was bleeding even though it was not her time of the month.6 After feeling something strange on her cervix, Lacks knew it was imperative for her to go visit a doctor.
Lacks made an appointment at The Johns Hopkins Hospital in Baltimore and her biopsy results determined that she had Stage I epidermoid carcinoma of the cervix, or cervical cancer. The doctor that examined her found it incredibly interesting that even though she had no cervical abnormalities when she delivered a baby at Hopkins three months prior, she now returned to the hospital with a cancerous tumor.7 After the mass was diagnosed as cancerous, Lacks was instructed to return to the hospital to begin radium treatment. Radium was known to cause cancer, but it was also known to kill cancer. Unfortunately, it was also known to burn the skin, which is exactly what happened to Lacks during her treatment. Those close to her were horrified when Lacks confided in them the damage from her treatment, telling them that “Lord it just feels like that blackness be spreadin all inside me.”8
That “blackness,” her cancer, was actually spreading all inside her. In August 1951, Lacks returned to Hopkins, asking to be admitted because her pain was unbearable. She died a grim death on October 4, 1951 at age 31 from cancer that had metastasized throughout her entire body. Lacks was buried in a wooden box in an unmarked grave in Clover, Virginia. What Henrietta Lacks and her family did not know, however, was that she would live on forever through her cells. During her cancer treatment at Johns Hopkins, her doctor took healthy and cancerous samples from Lacks’ cervix without informing her of his actions or getting consent from her, and gave them to George Gey, a cancer researcher.  This was standard practice, and, at the time of Lacks’s death, there were no state or federal laws regarding obtaining consent from any patient.9 Gey was constantly analyzing human cells in an effort to create the perfect culture medium, or the liquid used for feeding cells. After being placed in a Petri dish, the cells would usually die within a few hours, but Gey found that Henrietta’s cells did something amazing. Her cells kept reproducing.
Gey started his own cell line, which he named HeLa in tribute to Henrietta Lacks. Neither Gey nor his assistant revealed the name of the original owner of the immortal cell line, thus making Lacks’ name unknown to the public. The medical breakthroughs from the usage of HeLa cells quickly began after Lacks’ death. A scientist named Jonas Salk proclaimed that he had found a cure to polio but needed to test the vaccine first. Salk acquired some HeLa cells, and, in 1954, Salk released the vaccine that prevented polio. Millions of lives were saved from this disease, thanks to the testing performed on the HeLa cells.
Since Gey did not patent his HeLa cells, labs all over the world soon began obtaining these unique cells for research and experiments. HeLa cells even went to space when the United States wanted to test how human cells would react in zero gravity, and were used to determine the affects of the atomic bomb.10 Scientists used HeLa cells to study molecular biology, virology, and genetics. Lacks’ cells were also used for research on cancer, AIDS, and, more recently, Human Papillomavirus (HPV) and In Vitro Fertilization (IVF). Vaccines and drugs for diseases such as herpes, leukemia, influenza, hemophilia, and Parkinson’s disease were also developed through testing done on HeLa cells.
Henrietta Lacks’ cells were being used to make scientific breakthroughs beyond many researchers’ wildest dreams, but her family was unaware of Henrietta’s contribution to science. In 1953, a reporter at the Minneapolis Star claimed that the HeLa cells belonged to a woman named Henrietta Lakes, alerting people for the first time that these were human cells.11 Other reporters claimed that HeLa stood for Helen Lane or Helen Larson.12 Either way, the name Henrietta Lacks was never published, and the Lacks family was unaware that Henrietta’s cells were being circulated around the globe until 1973.

One day in 1973, Bobbette Lacks, Lawrence’s wife, was having lunch with her friend and her friend’s brother-in-law. The brother-in-law and Bobbette discovered that they were from the same part of Baltimore, and Bobbette told him that her last name was Lacks. Her friend’s brother-in-law told Bobbette that he worked at the National Cancer Institute and that he had been working for years with cells in his lab that he just recently learned belonged to a woman named Henrietta Lacks. Bobbette soon learned that this man, like many others around the world, had her mother-in-law’s cells in their labs.13 Thus began the anger, confusion, and frustration that would consume the Lacks family for decades.
The Lacks family, still living in Baltimore City, was impoverished and in poor health. They were being harassed by doctors and researchers for blood samples and developed a serious mistrust of Johns Hopkins Hospital. They felt that they had been robbed by Hopkins and thought that Henrietta was still alive and her body was being held hostage in the hospital. Some members of the family thought that suing the hospital for taking a part of Henrietta without her consent or knowledge was the proper path, but they would soon learn their case was fruitless. Around the same time the Lacks family discovered the truth about the HeLa cells, a Californian man named Roger Moore was attempting to sue his doctor for unknowingly scraping his cells and profiting from them. The case finally reached the Supreme Court of California, and the court ruled that “When tissues are removed from your body, with or without your consent, any claim you might have had to owning them vanishes. When you leave tissues in a doctor’s office or a lab, you abandon them as waste, and anyone can take your garbage and sell it.”14 This ruling set a precedent, stripping a large amount of power away from patients and legally allowing doctors and researchers to financially exploit their patients if they discovered something medically groundbreaking. This opened a global debate about bioethics, but also left the Lacks’ family without a legal case.
In 1997, the British Broadcasting Corporation (BBC) came to Baltimore to interview the Lacks family for a documentary about the HeLa cells’ role in cancer research. This gained some publicity about the woman behind the HeLa cells, and, in the same year, then United States Representative Robert L. Ehrlich, Jr. formally addressed Congress about Lacks, saying that “Henrietta Lacks’ selfless contribution to the field of medicine has gone without acknowledgement for far too long. Her cells made her immortal: through her death, countless others have been saved by the research that was made possible through her cell line…I sincerely hope her name will also be immortalized as one of courage, hope, and strength, and that due recognition will be given to her role in medicine and science.”15 Henrietta’s enormous contribution to decades of science was recognized, but true justice for Henrietta still seemed hopeless.
Hope came to the Lacks family a few years later in the form of a young, white, female writer named Rebecca Skloot. Skloot became fascinated with the mystery behind the HeLa cells at age sixteen and spent many years trying to uncover the story behind the immortal cells. The Lacks, understandably, were mistrusting of Skloot and her motives. Skloot, however, proved to be faithful to the family in regards to spreading their story, and she became the closest with Henrietta’s daughter, Deborah. Deborah never knew her mother but always wanted to understand what happened to her. Through Deborah, Skloot was able to better understand the struggles of the family and tell the story of Henrietta, and through Skloot, Deborah was able to learn about her mother and even hold her cells. Skloot published The Immortal Life of Henrietta Lacks in 2010 and describes the book as “not only the story of HeLa cells and Henrietta Lacks, but of Henrietta’s family—particularly Deborah—and their lifelong struggle to make peace with the existence of those cells, and the science that made them possible.”16 The novel became an instant best-seller and was even comissioned by Oprah Winfrey to be made into a movie. The Lacks family was finally given the recognition they struggled for years to gain.
In 2013, 62 years after Henrietta’s death, the Lackses were finally able to have a voice in the distribution of HeLa cells. Controversy began again in early 2013 after a German lab published the HeLa genome in an online magazine. The German research lab published the paper “to show the degree to which the genomes of HeLa cells diverged from those of healthy cells, so researchers could take that into account when designing experiments and analyzing results from studies using the HeLa cell line,” but the Lacks family worried that others would be able to formulate their genetic codes through this public information.17 The article was taken down, but the Lackses still felt their biological information was being distributed without their consent and that “history was repeating itself” since anyone could get a hold of Henrietta’s genomes.18 In August 2013, an agreement between the Lackses and the National Institute of Health (NIH) was formulated, decreeing that scientists had to obtain permission from the NIH in order to conduct research on HeLa cells. The NIH and two members of the Lacks family would approve or reject the applications as they saw fit. Finally, the Lacks family could stop the outright exploitation of Henrietta.
Henrietta Lacks did not live a long life, but her cells will live on forever. She has had a greater impact on science than any other scientist or researcher will ever claim, and her cells have been used to save the lives of a countless number of people and animals. As the most important person in medicine, and as a former Maryland resident, Henrietta Lacks will be immortalized as an important Maryland woman through her induction into the 2014 Women’s Hall of Fame.

 

  1. Henrietta Lacks Women’s Hall of Fame 2014 Nomination Packet. Return to text
  2. “The Way of All Flesh,” Adam Curtis, available on YouTube: https://www.youtube.com/watch?v=C0lMrp_ySg8. Return to text
  3. Rebecca Skloot, The Immortal Life of Henrietta Lacks, (New York: Crown Publishers, 2010), 23. Return to text
  4. Ibid, 42. Return to text
  5. Ibid, 43. Return to text
  6. Ibid, 15. Return to text
  7. Ibid, 17. Return to text
  8. Ibid, 48. Return to text
  9. Alok Jha and Rebecca Skloot, “The ‘immortal’ Henrietta Lacks–Science Weekly,” podcast audio, The Guardian: Science Weekly, accessed June 25, 2014, http://www.theguardian.com/science/blog/audio/2010/jun/21/science-weekly-podcast-henrietta-lacks-rebecca-skloot?commentpage=1. Return to text
  10. Henrietta Lacks Women’s Hall of Fame 2014 Nomination Packet. Return to text
  11. Skloot, The Immortal Life of Henrietta Lacks, 105. Return to text
  12. Ibid, 109. Return to text
  13. Ibid, 180. Return to text
  14. Ibid, 205. Return to text
  15. Robert L. Ehrlich, Jr., “In Memory of Henrietta Lacks” (June 4, 1997), Congressional Record Volume 143, Number 75, https://beta.congress.gov/congressional-record/1997/06/04/extensions-of-remarks-section/article/E1109-1.  Return to text
  16. Skloot, The Immortal Life of Henrietta Lacks, 7. Return to text
  17. “German lab apologizes for publishing the genome of ‘immortal’ woman’s cell line,” Washington Post, April 2, 2013. Return to text
  18. Andrea K. Walker, “Lacks’ kin finally get say in use of her cells: After decades, NIH accord requires permission to use her genome in research,” Baltimore Sun, August 8, 2013. Return to text

Biography written by 2014 summer intern Sharon Miyagawa.

Return to Henrietta Lacks’ Introductory Page

 

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