1. The Registrar General of Scotland wrote to the College to consult on a proposal that the Registrar should collect information about a deceased person’s ethnic group at the time the death is registered. The information would be obtained from the person who registers the death – but there would be no obligation to provide it, and it would not be shown on the entry in the death register or on an extract from the death register (commonly known as a "death certificate"). Views would be welcome.
Why seek this change?
2. In 2009, NHS Health Scotland published a report entitled “Health in our Multi-ethnic Scotland – Future Research Priorities”. This report, produced by an expert working group and endorsed by the Chief Medical Officer, comprehensively reviewed what is currently known about the health of ethnic minority groups in Scotland and how this compares with the population at large. From the available published research, it found that there can be important differences between ethnic groups regarding susceptibility to and death from various important conditions including cardiovascular disease, diabetes and cancer. In some cases, ethnic minorities do better than the general population, in some worse. However, the working group found that understanding was seriously hampered because ethnic origin is not recorded at the time of death: only the deceased’s country of birth is recorded. Having this information would allow a much better understanding of the differences in the health between ethnic groups, which could be used to guide efforts to protect and improve the health of the Scottish population. So the working group recommended that ethnic origin should be included in the information requested by the registrar at the time of death.
Proposal in more detail
3. Currently, the information collected by a registrar does not include any indication of ethnicity of a deceased person. Annex A to this letter replicates the electronic Form of Particulars that is completed by the registrar to record a death. The information gathered includes:-
- Information about the deceased: name; occupation, date of birth; age; marital or civil partnership status; when and where died; residence; country of birth.
- Cause of death: cause(s) of death; details of certifying doctor.
- Spouse / civil partner: number of spouses/civil partners; date of birth of surviving widow, widower or civil partner.
- Parents: names; occupation; whether retired or deceased; marital or civil partnership status.
- Informant: relationship to the deceased; address; signature.
4. Not all of that information appears in the entry in the register of deaths or in any extracts produced from that entry (the "death certificate"). For instance, the date of birth of any surviving widow, widower or civil partner of the deceased (underlined above) is treated as confidential and is used only in the preparation of statistics by the Registrar General for Scotland.
Ethnicity Information at Registration of Death
5. It is proposed that the Registrar should ask the informant for information about the deceased person’s ethnic group, by adding a question to the Form of Particulars. The question will seek the information sought in question 15 of the 2011 Scottish Census questionnaire. This is replicated at Annex B.
6. The informant would not be obliged to provide the information and any information given would be accepted as being as the informant's best knowledge of the deceased, because not all informants may be aware of the deceased person’s ethnic group. No additional information would be collected about the informant.
7. Since the purpose of collecting this information is to help to inform research into the correlation between causes of death and ethnic group, the informant would be asked to consent to the Registrar General for Scotland sharing that information with the NHS and for the use of the data for anonymised statistical purposes. A draft consent provision for inclusion in the Form of Particulars is at Annex C.
Timing
8. It is proposed to implement the proposal in time with the start of the next registration year (1 January 2012). That will give sufficient time to amend the electronic registration system and also to prepare amended paper Forms of Particulars that are used by non-computerised registration offices.
9. The Registrar invited comments on the proposal to collect information about the deceased person's ethnic group, when a death is registered, and for that information to be shared with the NHS and for the use of the data for anonymised statistical purposes , but not shown on the "death certificate".
COMMENTS ON GENERAL REGISTER OFFICE FOR SCOTLAND
ETHNICITY INFORMATION AT REGISTRATION OF DEATH
The Royal College of Physicians of Edinburgh is pleased to respond to the General Register Office for Scotland on its consultation on Ethnicity Information at Registration of Death.
The College welcomes the inclusion of voluntary ethnicity information as this would be extremely valuable for research and epidemiological purposes, and it is in line with Scotland’s commitment to addressing health inequalities. We should not make disclosure mandatory and accept that, as a result, it will not be comprehensive but will be a very useful start. The consent form is essential so that qualifying persons registering deaths are aware of the use of the ethnicity information and that disclosure is voluntary.