Representation of ethnicity

A conversation has started on the CKM Discussion page, but I’m bringing it here to open it up for broader community involvement…

Aljoscha Kindermann started the thread on 22 Jan:
In the HiGHmed use case cardiology we need to represent e.g. "caucasian ethnicity" and "black skin color" as anamnesis parameters. The ethnicity has been shown to play a role in different disease characteristics in cardiology.Our first thinking was to include it into the "Health risk assessment" evaluation archetype which we also use to store information about the family prevalence.
However, classifying ethnicity as a risk factor would be insufficient because it can also give information about different necessary treatment approaches.
Therefore I fear that this classification could not only be technically incorrect but also regarded racist..
Is there any experience here of how to to represent ethnicity correctly? 

@ian.mcnicoll responded on 23 Jan
It is a very tricky one, mostly for obvious cultural / human reasons and it came up recently in a conversation amongst Scottish clinical informaticians, in relation to Covid.
There are no universal lists of ethnicity because the granularity is often predicated by local sensitivity/custom e.g in the UK the ‘ethnicity’ list separates ‘UK Irish’ from other caucasian ethnicities because of historical prejudice i.e in this case it is designed to help prevent ongoing prejudice, but, of course, in the wrong hands it might do exactly the opposite.
The natural place for ethnicity is probably really in the demographics space but that can be seen as potentially threatening, and for the perfectly reasonable scientific purpose (which may very well be anonymised) it may make sense to have it in the EHR but where.
Perhaps there is a case for an Ethnicity archetype akin to the Gender archetype (which shares similar cultural challenges), really as placeholder but explaining the challenges and really leave to implementation to locate it safely in the HR and populate an appropriate valueset.

Aljoscha responded again on 26 Jan
Thank you for your thoughts! This suggestion of using the gender archetype as an example for orientation is a very good suggestion in my opinion. This is helpful as the concept of gender is also a challenging discussion.
I like how it (gender archetype) leaves the freedom of a lot of different implementations. I will try to come up with an idea of how to build an archetype which also leaves freedom to use it with different concepts.

@varntzen responded later on 26 Jan
Nice, have a go at a new archetype akin to the Gender archetype for a start. Actually it is not allowed to register that information in Norwegian EHR’s.
As an alternative can we use the specific genetic markers in question for various health risks or Nota Bene information?

@natalia.strauch responded later on 26 Jan
The recording of ethnicity and race is even recommended in the clinic by the FDA: Collection of Race and Ethnicity Data in Clinical Trials | FDA
And the CDISC standard therefore assigns these items together with SEX and AGE to the DEMOGRAPHICS module.
It would therefore be right to also have a specific archetype for Race and Ethnicity Data in the openEHR.

@heatherleslie responded on 27 Jan
I’ve been grappling with the notion of ethnicity and race for some time. It is quite contentious and I think needs careful consideration.
I’ve uploaded a candidate model to a CKM incubator based on work I’ve done in Australia, for consideration -
The Use currently reads as:
“Use to record the identification with one or more cultural and ethnic groupings, usually self-described by the individual.
The concept of ethnicity allows individuals to self-nominate a kinship or connection with a cultural or social group. This may often, but not always, be associated with a geographic region or place of origin.
The concept of categorisation by race or skin colour is often contentious and in some places, the term ‘race’ may be considered interchangeable with ‘ethnicity’. This is common and acceptable in some places, such as the USA, yet is illegal in others, such as Norway. Contributing to the confusion, many value sets for ethnicity also contain values that describe physical qualities such as skin colour or geographical origin. In view of this, ‘race’ has not been explicitly modelled as a separate data element, but instead ‘Ethnicity’ has been represented with the option for multiple occurrences so that it could be represented and renamed in a template, or it may be feasible for ‘Race’ to be added as a separate data element in a future specialisation.
Typically ethnicity is considered as a component of a demographic record for an individual, however it has been represented within this clinical archetype, for when it needs to represent clinical data or be used in an algorithm within a clinical system and access to appropriate demographic data or values sets is not feasible.”