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Expand Up @@ -63,6 +63,9 @@ Guiding principles
Introduction to race and ethnicity
------------------------------------------

Why is this important?
~~~~~~~~~~~~~~~~~~~~~~

Race, ethnicity, and ancestry are complex, interrelated social
constructs that have significant impacts on individuals' lives and
health outcomes. Despite the importance of race and ethnicity in
Expand All @@ -85,6 +88,178 @@ researchers, policymakers, and communities to ensure that our
understanding of these concepts evolves alongside societal changes and
scientific advancements.

What are race, ethnicity, and ancestry?
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

.. note::

Scientifically defining race, ethnicity, and ancestry can feel uncomfortable,
particularly because of the history of scientific racism.
Scientific racism used pseudo-scientific ideas, accepted in the scientific establishment at the time
(18th Century through World War II),
to justify racial inequities and essentialize race.
**Racism is not scientific; scientific racism is bogus, in addition to being morally reprehensible.**
Here, we define race, ethnicity, and ancestry from a scientific perspective and *debunk* scientific racism.

Ancestry
^^^^^^^^

Ancestry refers to the characteristics of one's ancestors:
parents, grandparents, great-grandparents, and so on.
Technically, these characteristics could be anything (which ancestors were farmers, for example),
but in the context of this guide we are focused on geographic ancestry.
Geographic ancestry generally means where one's ancestors lived a few hundred years ago,
since mobility was quite a bit lower before then, but there are exceptions.
People often have only a vague idea about their own ancestry!

It is common to quantify ancestry, e.g. "I'm 1/8th Italian" to mean that
1 out of 8 great-grandparents lived in Italy.
Strictly speaking, this is *genealogical* (geographic) ancestry, since it counts ancestors equally.
On the other hand, *genetic* (geographic) ancestry refers to the ancestors you inherited genes from;
due to the random nature of genetic inheritance, many distant ancestors
did not actually contribute anything to your genome.
Genetic ancestry is frequently operationalized in genetic research using
*genetic similarity* to modern-day populations as a proxy. [Mathieson_Scally_2020]_
The limitations of this proxy measure should not be ignored!
For example, there is huge inequity in which modern-day populations
have more genetic testing data available for comparison.

Humans have been globally widespread for only about 60,000 years --
an incredibly short timespan on an evolutionary scale!
We share 99.6%-99.9% of our DNA with each other, making us nearly identical.
That said, there are some small genetic differences between populations.
Some of these are probably random drift, but others are due to different traits
being advantageous in different geographic regions.
For example, sickle cell trait is protective against malaria,
so populations in regions where malaria is endemic are much more likely to have the gene for it.
Often, people use examples like this to claim that "race" is a biologically meaningful concept,
but it is really genetic ancestry that drives these differences,
and racial categories are only *correlated* with ancestry -- we discuss this further below.

Ethnicity
^^^^^^^^^

An ethnicity is a group *cultural identity*,
which can include language, food, art, religion, social norms, and so on.

Frequently, ethnicities are associated with an area of the world,
though this may or may not be a country.
There is a distinct French culture that roughly corresponds to the boundaries of France,
while Igbo culture is mostly found in just one part of Nigeria;
this is a legacy of European colonizers splitting Africa along arbitrary lines.

There are also ethnic groups, such as the Romani people,
that have a distinct cultural identity despite having been spread out geographically for centuries.
These groups often live among people of other ethnicities but preserve their unique culture.

When families immigrate from one place to another,
they frequently maintain some aspects of multiple ethnic identities,
for example speaking one language in public and another at home.
Over generations, their descendants may assimilate
(adopt the prevailing culture of the place they are now living)
completely, or only partially, maintaining a "hyphenated" cultural identity like Chinese-American.

Language is a particularly important aspect of ethnicity when it comes to health inequities,
as speaking a non-dominant language, or even speaking the dominant language of an area with a non-native accent,
can lead to others perceiving one's ethnicity and using that as an excuse for discrimination.
Limited proficiency in the dominant language spoken by healthcare professionals in an area
can also pose a substantial practical barrier to accessing the healthcare system.

Race
^^^^

Race is a social construct **with no inherent biological meaning** that categorizes people
primarily based on a few visible characteristics such as skin and eye color, hair, and facial features.
These highly visible characteristics are a tiny proportion of what we inherit genetically --
think about all the important biological traits such as blood type
that are invisible to us and were not even known to exist until a few hundred years ago!

For all of recorded history, people have noticed that some visible traits differ between populations.
At least as far back as the ancient Greeks, people have held stereotypes and made overgeneralizations
about other tribes or groups, based in part on appearance.

These overgeneralizations became dramatically stronger and more impactful roughly 500 years ago,
when colonists from Western Europe took the land and resources of Indigenous people in many places around the world
and began kidnapping and enslaving large numbers of people from Africa.
Colonialism and slavery created a widespread and enduring association between visible hereditary traits and social status.
This association reinforced stereotypes and prejudice, which in turn reinforced segregation, creating a vicious cycle.

Unfortunately, scientists also played a prominent role in legitimizing racism,
expounding theories of human evolution and biology that reinforced ideas of distinct human "races"
and justified inequities in society.
These theories, based on cherry-picked anecdotes and ascribing disparities to biology that were in fact created by social forces,
have been soundly debunked.
Modern science regards race as an **entirely social construct**.
The only reasons it is correlated with health outcomes are the impacts of racism
and the (very rough) correlation between race and genetic ancestry.

As racial categories are socially defined, they can and do change over time.
In the US, for example, people of Italian or Irish ancestry
started to be seen as White (and therefore not targets of racism) in the 20th century.
Jews were widely seen as a "non-White race" in pre-World War II Europe
but are not even considered a racial group in current European and North American classifications.

Despite changes in legal and political structures such as formal decolonization,
the abolition of slavery, and descendants of enslaved people gaining their civil rights,
the legacy of colonialism and slavery can be clearly seen today.
Racial discrimination and stereotypes persist,
de facto segregation in housing and education remain widespread,
and in most former colonies, large racial disparities exist across health and economic domains.

Though racial "categories" originally were based on visible characteristics,
racial prejudice extends beyond these, to things like names, dialect, or fashion,
when these are used by an observer to "categorize" someone into a racial group. [Bertrand_2004]_

The history and origins of racism are complex,
and sometimes contentious, topics.
We've provided a brief overview here, but there is much more to learn.
We recommend the following resources to deepen your understanding.

* *Stamped from the Beginning* by Ibram X. Kendi
* *The Wretched of the Earth* by Frantz Fanon
* *The History of White People* by Nell Irvin Painter
* *A People's History of the United States* by Howard Zinn
* `The 1619 Project <https://www.nytimes.com/interactive/2019/08/14/magazine/1619-america-slavery.html>`_
by Nikole Hannah-Jones and others

.. note::

Most of these come from a US-centric perspective,
which reflects our own backgrounds but should not be taken as the only or most important perspective.
The history of racism is global.

Race, ethnicity, ancestry
^^^^^^^^^^^^^^^^^^^^^^^^^

Though we can understand race, ethnicity, and ancestry as distinct concepts,
they are deeply *causally* entangled.

For example, cultural processes like assimilation are greatly impacted by racism
because they depend on the prevailing society's perception and acceptance of an ethnic group.
For example, the families of European immigrants to the United States were able to assimilate
and be considered "American" much more easily than those from other places in the world,
due to racial prejudice.
Outsiders might expect several ethnic groups to have similar cultures,
or mix up their cultural practices,
because they perceive members of those ethnic groups as being in the same racial category.
Racism can even create new ethnic identities, as in the case of African American culture,
which emerged because of racial segregation and shared experiences of oppression in the United States.

On the other hand, ethnicities can also become "racialized."
A good example of this is people of Puerto Rican ancestry in New York City --
though in most places in the US people of Puerto Rican ancestry are perceived as Hispanic/Latino,
in New York they are perceived as a distinct racial group
and there is racial prejudice against them specifically. [Grosfoguel_2004]_

Though we've focused on race, ethnicity, and ancestry here,
there are other concepts these are sometimes conflated with,
particularly **nationality** (country of residence or citizenship),
**national origin** (country of birth),
and **immigration status**.
While these are out of scope for the present guide,
that doesn't mean they are less important than race, ethnicity, and ancestry.
We may address these concepts in a future guide.

1.0 Research considerations
++++++++++++++++++++++++++++

Expand Down Expand Up @@ -527,4 +702,13 @@ Reporting results accurately
Kaplan JB, Bennett T. Use of Race and Ethnicity in Biomedical Publication. JAMA. 2003;289(20):2709–2716. doi:10.1001/jama.289.20.2709
.. [Liebler_2008]
Liebler CA, Halpern-Manners A. A practical approach to using multiple-race response data: a bridging method for public-use microdata. Demography. 2008 Feb;45(1):143-55. doi: 10.1353/dem.2008.0004. PMID: 18390296; PMCID: PMC2831381.
Liebler CA, Halpern-Manners A. A practical approach to using multiple-race response data: a bridging method for public-use microdata. Demography. 2008 Feb;45(1):143-55. doi: 10.1353/dem.2008.0004. PMID: 18390296; PMCID: PMC2831381.
.. [Bertrand_2004]
Bertrand M, Mullainathan S. Are Emily and Greg More Employable Than Lakisha and Jamal? A Field Experiment on Labor Market Discrimination. American Economic Review. 2004;94(4):991-1013. doi:10.1257/0002828042002561
.. [Mathieson_Scally_2020]
Mathieson I, Scally A (2020) What is ancestry? PLoS Genet 16(3): e1008624. https://doi.org/10.1371/journal.pgen.1008624
.. [Grosfoguel_2004]
Grosfoguel, R. (2004). Race and Ethnicity or Racialized Ethnicities?: Identities within Global Coloniality. Ethnicities, 4(3), 315-336. https://doi.org/10.1177/1468796804045237
6 changes: 4 additions & 2 deletions docs/source/models/causes/neonatal/preterm_birth.rst
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Expand Up @@ -134,6 +134,8 @@ Note that these probabilities are not used directly in the model and are include
* - neonate died without RDS
- The child simulant died due to preterm birth **without** respiratory distress syndrome within the first 28 days of life

.. _2021_cause_preterm_birth_mncnh_transition_probability_definitions:

.. list-table:: Transition Probability Definitions
:widths: 1 5 20
:header-rows: 1
Expand All @@ -142,10 +144,10 @@ Note that these probabilities are not used directly in the model and are include
- Name
- Definition
* - mr_w
- preterm mortality risk
- Preterm with RDS Mortality Risk
- The probability that a simulant who was born alive dies from preterm with RDS during the neonatal period
* - mr_wo
- preterm mortality risk
- Preterm without RDS Mortality Risk
- The probability that a simulant who was born alive dies from preterm without RDS during the neonatal period


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Expand Up @@ -502,11 +502,10 @@ V&V Checks:
4. Low Birthweight/Short Gestation Risk Effect on Neonatal Moratlity Model
5. Hemoglobin Risk Exposure
6. Hemoglobin Risk Effect on Maternal Hemorrhage
7. :ref:`Intervention Models <neonatal_intervention_models>`

.. todo::
a. :ref:`CPAP for treating Preterm with RDS <cpap_intervention>`

* Add in components that Abie missed

.. _mncnh_portfolio_4.0:

4.0 Data Inputs
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