There has been a lot of concern and controversy over the August 9 census. Many people are alarmed and rightly so. The Australian Government has made steady incursions into peoples privacy and the decision to collect names and addresses and then store this information for 4 years (rather than 18 months) along with other census information is the latest attempt.There was no public consultation about this decision (the ABS had earlier raised the possibility of long-term storage twice before but were advised against it). And the case for long-term data retention has not been put to the public. Names have always been collected, but then the forms were de identified and names destroyed.How the data will be managed now is anyone’s guess. The method of collecting information has changed as well. Even though people have been able to fill out the census online since 2006, this is the first time the ABS is moving to a digital-only method of data collection. Over the last month, ABS sent out letters with codes to enter online which would then lead to the census form. This move was ill advised for many reasons. Firstly, many rural areas (remote areas will get paper copies) are not well covered by telecommunication networks and in places where there is high coverage, there have also been network outages. Telstra has recently had many problems with national outages meaning companies and healthcare organisations have been unable to operate at normal levels. Australia’s telecommunication networks are not mature or sophisticated enough to cope with a digital-only national census. Secondly, this move is discriminatory. Many people in our community cannot afford to own computers let alone afford high internet charges. Money for food, housing and clothing is more important. Public libraries may not have the resources to cope with this population..Many older Australians do not desire to be digital citizens and don’t know how to operate the equipment from choice. Thirdly, sending personal information over telecommunication networks is risky and highly liable to being stolen (even an IT security expert has had his PayPal account hacked). And storing sensitive information electronically for any period of time makes it accessible for longer and thus open to legitimate and illegitimate use.
So what should you do? Don’t boycott the census.Obtain a paper form (all sensitive information should travel via paper). Do not fill in your real name and address but provide correct information for all other questions. That way, agencies get correct information for planning purposes and your privacy is mostly secure. My mother is even removing identifying codes from the paper form.
At one of the many journal clubs I regularly attend, the article we were discussing included Race in the demographics. I’ve been mulling over Race in medical articles for some time now and my belief, informed by my cultural values, indicates to me that this is ingrained racism. I asked members of the journal club what they thought and whether they thought it a useful metric to count. The responses were mostly around the article being from the US and that it reflects how most of the US population think of themselves (there was some awkwardness there). Earlier in the week, I emailed a well respected epidemiologist and asked him what he thought, and he said that it is almost impossible to separate socio-economic and genetic factors . Race is a sociocultural concept that is used to classify humans by skin colour. It has been used to justify superiority of one group over another group. Ethnicity is expressing belongingness to a social group with similar cultural or national traditions. An ancestral group is the genetic link from an ancestor to descendants. Socio-economic groupings uses a persons position in society and is mainly based on occupation, industry or other professional activity. So what is a useful metric in medical research? Socio-economic grouping can indicate what food, health care, housing, education and other services a person has access to. Ancestral group can indicate who will suffer disease or other negative health outcomes due to genetic susceptibility. Race – what does that indicate? I suspect the use of race is a result of social conditioning and not intentional racism. It’s a curly question.
SAUER, N.J. FORENSIC ANTHROPOLOGY AND THE CONCEPT OF RACE: IF RACES DON’T EXIST, WHY ARE FORENSIC ANTHROPOLOGISTS SO GOOD AT IDENTIFYING THEM? Soc.Sci.Med. 1992, Vol.34, No.2, pp.107-111.
Templeton AR. Biological races in humans. Stud Hist Philos Biol Biomed Sci. 2013 Sep;44(3):262-71. doi: 10.1016/j.shpsc.2013.04.010. Epub 2013 May 16.
Fujimura JH and Rajagopalan R. Different differences: The use of ‘genetic ancestry’ versus race in biomedical human genetic research. Soc Stud Sci. Author manuscript; available in PMC 2012 Feb 1.
Ousley S, Jantz R, Freid D. Understanding race and human variation: why forensic anthropologists are good at identifying race. Am J Phys Anthropol. 2009 May;139(1):68-76. doi: 10.1002/ajpa.21006.
Last weekend, I had a very interesting Twitter conversation with Dr Jen Gunter, author of a well-read EBM blog about issues in ob/gyn. And I have to say I was mighty chuffed too when she asked for my opinion about this journal: Issues in Law and Medicine. After doing some investigating and digging around, it appears that one of the co-publishers is aligned with the American Right To Life organisation. Both co-publishers, the National Legal Center for the Medically Dependent & Disabled (U.S.) and the Horatio R. Storer Foundation, do not have websites as far as I can tell (please inform me if you find anything). This seems iffy – what publisher doesn’t want to publicise their offerings? You have to access the journal to find contact information and access is only available if you are a member of a organisation that has a journal subscription or a subscription to a full text database that includes the journal. I looked up the journal today and discovered that the chief editor is someone with a divinity degree. The referees include people from pro-life institutions such as the Lindeboom Institute and Christian ethicists and as well as that, includes a referee who is also a author of an article in one of the latest issues. The journal states that it peer-reviewed but that doesn’t mean anything much these days. Journal article submissions seem to fall under general correspondence. Dr Jen asks: should an anti-choice journal be indexed by Medline? Everyone is biased in some degree – it is impossible not to be unbiased about everything. My first thought was that there shouldn’t be censorship. Having said that though, databases including Medline have to operate within its stated scope. If it falls with scope and the content isn’t covered well, then it should be included (this is part of the journal inclusion criteria). Libraries aim to present all views as fairly as possible. But if it is well-covered by more scholarly fair-reasoned content, poorer content should be removed. This is not the only problem with this journal though. In the latest issue, there is an article bringing up the non-issue of vaccines causign autism, resulting in a outraged PubMed Commons comment. A major part of the journal inclusion criteria is Quality of editorial work. This includes retraction where appropriate (that anti-vaxxer article is one that is up for retraction), opportunity for dissenting opinion and as part of good publisher business practice, conflict of interest disclosures and editorial independence. This journal does not publicise it’s ties with the Right to Lief organisation and only implies it’s pro-life stance (the credentials of it’s editors and referees). This isn’t the end of the matter either. As PubMed is accessible by the general public, care and consideration needs to be taken about what sort of information should be indexed. The NLM should take steps to ensure it is not used as a political tool and including anti-choice articles thinly disguised as scholarly discourse in Christian ethics is an ethical issue in itself.