23andMe Holding Co. (Nasdaq: ME) (23andMe), a leading human
genetics and biopharmaceutical company, and the non-profit Sickle
Cell 101, have joined forces to expand awareness of people’s
sickle cell carrier status.
The collaboration will include DNA testing and access to
23andMe’s Health + Ancestry Service for up to 1,000 eligible
participants, and 23andMe will be providing monetary support
to Sickle Cell 101 to support this effort.
23andMe’s Health + Ancestry Service includes a Sickle Cell
Anemia Carrier Status report**, allowing participants to discover
their sickle cell carrier status. Although 23andMe’s report
includes extensive information about what it means to be a carrier
of a sickle cell gene, this collaboration gives those with
additional questions a trusted and reliable community partner like
Sickle Cell 101 for answers. For instance, if a person has
questions about the differences between having the sickle cell
trait — being a carrier of one copy of the HbS variant — versus
having sickle cell disease (inheriting two copies of the sickle
cell gene), they can discuss this with a team of experts and
certified sickle cell educators at Sickle Cell 101.
Sickle Cell 101 is a nonprofit organization that connects,
educates, and empowers the sickle cell community through targeted
digital engagement and data-driven initiatives. As the largest
global digital patient organization that specializes in sickle cell
disease and sickle cell trait education, the organization strives
to advocate for improved funding for research and health equity for
the global sickle cell community.
“This project builds on what we’re already doing at 23andMe, but
also what we’re working on in the future,” said Joyce Tung, PhD,
Vice President of Research, 23andMe. “We have both research
projects and an ongoing awareness campaign focused on sickle cell.
Adding Sickle Cell 101’s resources and expertise will allow us to
expand that effort to more people. Beyond that, 23andMe is about
empowering people through access to their genetic data so they can
make more informed decisions about their health. This is exactly
what this program and collaboration offers.”
Roughly one in 13 African Americans have the
sickle cell trait, meaning they have one copy of the HbS variant.
In other words, they are carriers of the sickle cell trait and can
pass that variant on to their children. Historically, access to
affordable and reliable genotype testing hasn’t been readily
available to individuals with African ancestry or ancestry from a
region where sickle cell disease is common. All of these have
resulted in most individuals being unaware of their sickle cell
carrier status and understanding how that can impact their family
planning decision making or their health in certain cases.
“At Sickle Cell 101, our holistic approach to advocacy includes
prioritizing both sickle cell disease and sickle cell trait
awareness,” said Dr. Stephen Boateng, Vice President of
Partnerships and Scientific Collaborations at Sickle Cell 101.
“While our primary focus is deservingly on educating and advocating
for improved funding, care, and treatment options for sickle cell
disease, this collaboration with 23andMe reinforces our commitment
to also addressing a historical healthcare disparity that has
deprioritized access to testing and reliable information to the
community most impacted by sickle cell.”
Other forms of sickle cell disease are also caused by variants
in the HBB gene. Instead of having two copies of the HbS variant,
like people with sickle cell anemia, people with other sickle cell
disease have one copy of the HbS variant and another variant
elsewhere in the HBB gene. Examples of other types of sickle cell
disease include hemoglobin SC disease and sickle beta thalassemia
disease.
Building Awareness, Expanding ResearchThis
project builds on 23andMe’s ongoing awareness program with the
Morehouse School of Medicine and the Sickle Cell Foundation of
Georgia. As part of that effort, the Sickle Cell Foundation of
Georgia also created a dedicated webpage for program participants.
Anyone who is participating in 23andMe’s African American Genetics
Project can access the site and connect with genetic counselors at
the Sickle Cell Foundation of Georgia.
From those efforts, we learned participants wanted to be able to
ask questions about their status. Along with raising awareness
about the importance of sickle cell carrier status testing and
improving access to testing, this collaboration with Sickle Cell
101 will greatly expand online resources for people who may be
sickle cell trait carriers or have sickle cell disease.
Beyond raising awareness, 23andMe is also committed to learning
more about sickle cell through our research. Our scientists are
working on sickle cell research, most recently collaborating with
scientists at the National Institutes of Health and Johns Hopkins
University School of Medicine. The study’s initial findings were
presented at the American Society of Hematology’s annual meeting in
2022 but have not yet been published. It is now the largest and
most diverse genetic study of the sickle cell trait.
23andMe’s Sickle Cell Anemia Carrier Status
Report**Authorized by the FDA, 23andMe’s Sickle Cell
Anemia Carrier Status Report looks at the HbS variant in the HBB
gene linked to sickle cell anemia.
Sickle cell anemia is the most severe form of sickle cell
disease. Three hundred million people worldwide and one in thirteen
Black or African Americans in the United States have sickle cell
trait, making them carriers for sickle cell anemia.
In addition to informing people if they have one copy of the HbS
variant and are carriers for sickle cell anemia, 23andMe's report
can also tell individuals if they have two copies of the tested
variant and if they are at risk of developing symptoms. However the
report does not describe one’s overall risk of developing
symptoms.
Because the HbS variant is more common in specific populations,
the Sickle Cell Anemia report is most relevant for people of
African descent, as well as people of Middle Eastern and South
Asian descent, as well as people from the Caribbean, the
Mediterranean, and parts of Central and South America.
*Eligibility:· You live in the United States·
You are at least 18 years old· You have African ancestry; identify
as Black, African American, or of African descent; or you have
ancestry from a region where sickle cell disease is common**· You
are willing to provide a saliva sample for DNA testing· You are
willing to agree to 23andMe’s Terms of Service and Privacy
Statement· Research consent is optional and not required for
participation in the program
About 23andMe23andMe is a genetics-led consumer
healthcare and biopharmaceutical company empowering a healthier
future. For more information, please visit www.23andMe.com.
About Sickle Cell 101Sickle Cell 101 (SC101) is
a Silicon Valley-based non-profit organization that specializes in
sickle cell education. Over the years SC101’s global and
world-renowned platforms have become reliable sources of
information trusted by patients, caregivers, healthcare providers,
and other stakeholders. SC101’s educational resources encompass
information for sickle cell disease (SCD) and sickle cell trait
(SCT).
Forward-Looking StatementsThis press release
contains forward-looking statements within the meaning of Section
27A of the Securities Act of 1933, as amended, and Section 21E of
the Securities Exchange Act of 1934, as amended, including, without
limitation, statements regarding the future performance of
23andMe’s businesses in consumer genetics and therapeutics and the
growth and potential of its proprietary research platform. All
statements, other than statements of historical fact, included or
incorporated in this press release, including statements regarding
23andMe’s products, strategy, financial position, funding for
continued operations, cash reserves, projected costs, plans,
potential future collaborations, product development and launches,
the successful commercialization and market acceptance of new
products and objectives of management, are forward-looking
statements. The words "believes," "anticipates," "estimates,"
"plans," "expects," "intends," "may," "could," "should,"
"potential," "likely," "projects," “predicts,” "continue," "will,"
“schedule,” and "would" or, in each case, their negative or other
variations or comparable terminology, are intended to identify
forward-looking statements, although not all forward-looking
statements contain these identifying words. These forward-looking
statements are predictions based on 23andMe’s current expectations
and projections about future events and various assumptions.
23andMe cannot guarantee that it will actually achieve the plans,
intentions, or expectations disclosed in its forward-looking
statements and you should not place undue reliance on 23andMe’s
forward-looking statements. These forward-looking statements
involve a number of risks, uncertainties (many of which are beyond
the control of 23andMe), or other assumptions that may cause actual
results or performance to differ materially from those expressed or
implied by these forward-looking statements. The forward-looking
statements contained herein are also subject generally to other
risks and uncertainties that are described from time to time in the
Company’s filings with the Securities and Exchange Commission,
including under Item 1A, “Risk Factors” in the Company’s most
recent Annual Report on Form 10-K, as filed with the Securities and
Exchange Commission, and as revised and updated by our Quarterly
Reports on Form 10-Q and Current Reports on Form 8-K. The
statements made herein are made as of the date of this press
release and, except as may be required by law, 23andMe undertakes
no obligation to update them, whether as a result of new
information, developments, or otherwise.
Important Test Information**The 23andMe PGS
test uses qualitative genotyping to detect select clinically
relevant variants in the genomic DNA of adults for the purpose of
reporting carrier status and reporting and interpreting genetic
health risks. The relevance of each report may vary based on
ethnicity. Our carrier status reports can be used to determine
carrier status, but cannot determine if you have two copies of any
genetic variant. These carrier reports are not intended to tell you
anything about your risk for developing a disease in the future or
anything about the health of your fetus, or your newborn child's
risk of developing a particular disease later in life. For certain
conditions, we provide a single report that includes information on
both carrier status and genetic health risk. The Sickle Cell Anemia
carrier status report is indicated for the detection of the HbS
variant in the HBB gene. The report can tell you if you have two
copies of the tested variant, and if you are at risk of developing
symptoms of sickle cell anemia, but does not describe your overall
risk of developing symptoms. This test is most relevant for people
of African descent. It is also relevant for people of Middle
Eastern and South Asian descent, as well as people from the
Caribbean, the Mediterranean, and parts of Central and South
America.
Contacts: 23andMe: press@23andme.comSickle Cell
101: ask@sc101.org
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