Epidemiology

"Estimating The Aboriginal Population In Early Colonial Australia: The Role Of Chickenpox Reconsidered' by Boyd H. Hunter and John Carmody in (2015) 55(2) Australian Economic History Review 112–138 comments

Noel Butlin radically altered the debate about the pre-colonial Aboriginal population when he provided a set of hypothetical demographic scenarios, which nonetheless were both grounded in economic theory or human ecological considerations and broadly consistent with what we know about the historical record. This research builds on Butlin’s legacy by exploring how his scenarios are consistent with both the medical understandings of the infectiousness and mortality of various diseases and the history of settlement. Another contribution from this paper is to highlight the possible role of chickenpox in the Aboriginal depopulation in the early colonial period.

 The authors state

After a prolonged period of coastal exploration of Australia by Europeans and Asians, the substantial process of colonisation was based on a unilateral appropriation of Aboriginal land by Britain in 1770. Though no war was ever declared, the frontier violence started shortly after arrival of the First Fleet and persisted well into the twentieth century. Like any war, declared or otherwise, the conflict led to many deaths on both sides. Nevertheless, the number of Aborigines who were directly killed as a result of such violence is likely to have been dwarfed by the spread of introduced diseases such as smallpox and respiratory diseases.

Many researchers have attempted to estimate the pre-colonial population. One of the first credible systematic estimates of the Aboriginal population was provided by Radcliffe Brown who argued for ‘the original population of Australia having been certainly over 250,000, and quite possibly, or even probably, over 300,000’; furthermore, he deliberately provided conservative estimates because the ‘data are scanty and for the most part unreliable’.

Noel Butlin provided a fundamental reassessment of the size and nature of the Aboriginal economy and population before 1788, with a particular focus on demographic modelling that was informed by some of the key economic features of the Aboriginal economy. Butlin extrapolated numerous detailed demographic scenarios based on extensive detailed knowledge of the early colonial history in the south-east of the continent. He convincingly argued that the early estimates were likely to be substantial under-estimates, and he eventually concluded that the pre-colonial population was between 1 and 1.5 million. Some of Australia’s leading archaeologists, notably John Mulvaney and Peter White, have argued that Butlin’s extrapolation of the circumstances and conditions in the colony of New South Wales was not warranted; nonetheless, they used some of his parameters to argue that the pre-colonial population was more likely to have been between 750,000 and 800,000 Aborigines. Over time these estimates became known as the ‘Mulvaney consensus’ about the best available estimates of Australia’s population before 1788. While most researchers have given considerable credence to such estimates, it is not entirely clear which set of Butlin’s parameters had been used to establish the consensus, except that the assumed rate of depopulation was conservative and that the mortality rates from diseases were relatively low outside the areas that were extensively settled by European colonists before 1850.

Butlin’s analysis was rigorous, yet there is clearly a wide variation in the possible Aboriginal population implied by demographic parameters provided in his research. Furthermore, there is some fundamental and unavoidable uncertainty about the basis of the calculations. Butlin’s Economics of the Dreamtime was subtitled a ‘hypothetical history’ and it is a legitimate exercise to examine the implications of the various assumptions outlined in that analysis. This article argues that it is necessary to specify clearly all of those underlying assumptions to enhance the credibility of the estimates. Particular attention is paid in the following analysis to the transmission of disease and associated mortality rates, but the article also reflects on the role of resource depletion associated with the dispossession that accompanied what was in some ways a military invasion.

This article argues that one disease is usually ignored in the existing calculations of the pre-colonial population, chickenpox. While smallpox probably killed many Aborigines, chickenpox is much more infectious than smallpox and therefore could potentially explain the apparent ease of transmission of the diseases across the less densely populated regions of the Australian continent. Less infectious diseases also have a role to play, especially if they have a high mortality rate. Some diseases can only be picked up by extensive contact with infected people, and hence the effect of such diseases depends on the proximity and exposure to infected people as well as the infectiousness of the disease and mortality rates for those who acquire the disease. That is, the historical progression of relatively dense settlements throughout the continent needs to be taken into account for less infectious diseases with high mortality rates to play a significant role.

The next section documents some of the range of demographic parameters and the possible population trajectories implied by those parameters. It also revisits some salient history that could inform the scenario-building exercise. The following sections explore problematic assumptions for estimating the pre-contact Aboriginal population with a view to motivating why we need to re-estimate the original Australian population. The plausibility of estimates hinges on the extent and timing of the transmission of disease, and the mortality of those diseases in the Indigenous communities at risk. The tension between various assumptions provides a reason to explore the role of chickenpox, which was not considered in Butlin’s simulations. After we provide an argument why that disease should be considered, Butlin’s scenarios are revisited with explicit assumptions about the transmission of disease partially informed by the history of settlement. The last two sections of the article examine the potential insights for the economic history of immediate post-contact period.

By imposing a greater consistency on the assumptions about transmission, infectiousness and mortality of diseases, we will eliminate less plausible hypotheses. Even after implausible hypotheses are eliminated, the pre-contact population can take on range of values, and it is a matter for debate and further research to establish a robust consensus about the most reliable population estimates. One of the important findings of this article is that the chickenpox hypothesis is both consistent with plausible assumptions and provides a relatively straightforward explanation for the ease of transmission of disease that may have killed so many Aborigines in the early days of European settlement.

 They conclude

This paper argues that there is a need for greater transparency and consistency in analyses of the economic history of Indigenous Australia. Most of the existing research on the pre-contact population provides only rather sketchy detail of how estimates are derived. Our analysis demonstrates that these details matter, in that the pre-contact population estimates can vary from 500,000 to 1.2 million. However, by being transparent in the assumptions required to construct the population, it should become apparent to the reader that some estimates are more plausible than others.

It is important that the preferred population estimates are consistent with both the known historical facts and current medical knowledge. Chickenpox is introduced in this paper as one of the possible main causes of Aboriginal mortality in this period because it is highly infectious and hence is plausibly a disease that could facilitate fast transmission of serious illness across the entire continent. The chickenpox scenario is also consistent with the ‘Mulvaney consensus’ about the pre-contact population.

The ‘History Wars’ have made it difficult to talk about the extent of frontier violence and warfare in Australia. The inadequacy of official records and existing evidence means that the issue will continue to be contentious. Notwithstanding, it is important to acknowledge related issues that are potentially significant for historical estimates of the Aboriginal population. This paper uses Butlin’s estimates of the effect of ‘resource loss’ as a proxy for what was, in essence, an (economic) conflict over scarce resources. The primary resources lost were both productive members of, and the land used to sustain, the local tribes. The potential population effect of ‘resource loss’ during the colonial expansion appears to be substantial. Clearly, ‘resource loss’ needs to be taken into account in any estimate of the Australian population in this period.

The estimates provided in this paper can vary substantially from the current consensus of the pre-contact Aboriginal population. The estimates based on the Campbell’s, Invisible Invaders, seem to lead to excessively high values for the population across Australia. Our preferred estimate is exactly equal to the Mulvaney estimate of 800,000 people.

The medieval Franciscan friar, William of Ockham, outlined the principle that the hypothesis with fewest assumptions should be preferred over more complex formulations. In our opinion, the hypothesis that chickenpox was responsible for a substantial numbers of Aboriginal deaths in the early colonial period provides the most straightforward explanation. More importantly, it also has a solid scientific basis in epidemiology. Not only does it provide assumptions that are consistent with what we know of the transmission, infectiousness and mortality of diseases, it does not rely on conspiracy theories. While Ockham’s razor can be used to support the proposition that chickenpox played an important role in the early European settlement, it is clear that other diseases played a role in the later colonial period. Whichever diseases were involved, it is important to ensure that assumptions about the epidemiology and medical knowledge about those diseases are accurate and the population estimates are consistent with the historical record. Ultimately, the research in this paper enhances our confidence in the Mulvaney consensus by allowing us to eliminate implausible scenarios. Of course the precise explanation for the population loss in this period is still open to debate.

Health Rights

'Imagining Global Health with Justice: In Defense of the Right to Health' by Eric Friedman and Lawrence O. Gostin in (2015) 23 Health Care Analysis 308-329 comments

The singular message in global health law is that we must strive to achieve global health with justice — improved population health, with a fairer distribution of benefits of good health. Global health entails ensuring the conditions of good health — public health, universal health coverage, and the social determinants of health — while justice requires closing today’s vast domestic and global health inequities. These conditions for good health should be incorporated into public policy, supplemented by specific actions to overcome barriers to equity.

A new global health treaty grounded in the right to health and aimed at health equity — a Framework Convention on Global Health (FCGH) — stands out for its possibilities in helping to achieve global health with justice. This far-reaching legal instrument would establish minimum standards for universal health coverage and public health measures, with an accompanying national and international financing framework, require a constant focus on health equity, promote Health in All Policies and global governance for health, and advance the principles of good governance, including accountability. While achieving an FCGH is certainly ambitious, it is a struggle worth the efforts of us all. The treaty’s basis in the right to health, which has been agreed to by all governments has powerful potential to form the foundation of global governance for health.

From interpretations of UN treaty bodies to judgments of national courts, the right to health is now sufficiently articulated to serve this role, with the individual’s right to health is best understood as a function of a social, political, and economic environment aimed at equity. However great the political challenge of securing state agreement to the FCGH, it is possible. States have joined other treaties with significant resource requirements and limitations on their sovereignty without significant reciprocal benefits from other states, while important state interests would benefit from the FCGH. And from integrating the FCGH into the existing human rights system to creative forms of compliance and enforcement and strengthened domestic legal and political accountability mechanisms, the treaty stands to improve right to health compliance. The potential for the FCGH to bring the right to health nearer to a universal reality calls for us to embark on the journey towards securing this global treaty.

Copyright and Freedoms

The Government has released the exposure draft of the Copyright Amendment (Disability Access and Other Measures) Bill 2016 (Cth), with public submissions due 12 February next year.

The under-appreciated Australian Law Reform Commission has meanwhile delivered to the Attorney-General its final report for the Inquiry into Commonwealth laws that encroach on traditional rights and freedoms (aka the Freedoms Inquiry). The ALRC Issues Paper was noted here.

The A-G is required to table the report within 15 parliamentary sitting days of receipt; the report then becomes a public document. On occasion he's been somewhat tardy.

The Copyright Amendment Bill is described by the Department of Communications and the Arts as seeking to:

• streamline and simplify the existing copyright exceptions and limitations for the use of copyright material by the disability sector 
• simplify the preservation exceptions for copyright material in libraries, archives and prescribed ‘key cultural institutions’ 
• consolidate and modernise the statutory licences that allow educational institutions to use and pay licence fees for works and broadcasts 
• allow copyright materials to be incorporated into educational assessments conducted online
• expand the scope of the “safe harbour” scheme to include online service providers 
• introduce new standard copyright terms for published and unpublished works and for Crown copyright in original works.

The Department states

The Productivity Commission commenced an inquiry into Australia’s intellectual property arrangements in August 2015 [noted here] and is scheduled to report in August 2016. It is appropriate to proceed with the amendments contained in the Bill before the Commission reports as those amendments simplify the operation of the Act and are likely to be consistent with the recommendations (if any) made by the Commission in relation to limitations and exceptions to copyright

Moving forward with Marrakesh is a good thing. We might wonder what would happen if the Commission's recommendations were contrary to changes that had been made prior to August, assuming that the Government gets the numbers in the Senate. The consultation also follows the response to the Harper Review report noted here.

The draft is explained as follows -

Disability access

The proposed amendments for disability access consolidate the various existing exceptions and limitations in the Act that help to provide access to copyright material for certain authorised organisations and individuals. The draft legislation also proposes two separate standalone exceptions, one for institutions assisting persons with a disability and one for use by individuals (fair dealing).

Definition of ‘person with a disability’

The proposed amendments introduce a consolidated definition of ‘person with a disability’ modelled on the existing s200AB(4) of the Act as a person with a disability that causes the person difficulty in reading, viewing or hearing copyright material in a particular form.

Authorised organisations

The proposed amendments replace the existing statutory licences for institutions that assist persons with a print or intellectual disability with a streamlined single exception that applies to institutions assisting a person with a disability in relation to all copyright material.

The proposed single exception first requires an organisation to seek to purchase material before a copy can be made. The proposed measure clarifies that this occurs on a format-specific basis, not title-specific. In practice, this would mean that copies could be made in a format that provides comfortable access to information even if the particular book requested is already available in a different, but unsuitable, format for the person requesting the copy.

The proposed single exception removes the requirement that certain institutions be declared by the responsible Minister to be an institution assisting persons with a print or intellectual disability, and administrative requirements relating to providing a remuneration notice to the collecting society. The proposed exception does not require notification of copying to a collecting society, but also does not prevent the current arrangements from continuing, should institutions wish to maintain a central register of accessible format copies. This could also help with cross-border transfer of copies for the purposes of the Marrakesh Treaty.

The proposed single exception covers an educational institution (as currently defined) or any other institution which provides assistance to persons with a disability as a principal function or one of its principal functions.

The Department proposes to prepare guidelines in consultation with affected stakeholders that would identify best practice approaches to dealing with accessible copies and other relevant matters relating to the practical application of the amendments.

It asks -

Q 1: Do you think the proposed provisions are sufficiently clear and will operate effectively to meet the objective of ensuring access to accessible format copies of works?

Q 2: Do you prefer the terminology ‘organisation assisting a person with a disability’?

The explanation goes on - 

Fair dealing for disability access

The proposed amendments replace the existing exception in s200AB(4) with a fair dealing exception. The proposed fair dealing exception applies to the same types of copyright material and the same categories of uses. The key change to the proposed exception is that the criteria in s200AB(1) no longer apply, instead fair dealing will apply.

Print Disability Radio Licence Scheme

The Print Disability Radio Licence Scheme provided for under section 47A of the Act states that it is not an infringement for licensees to make a sound recording of certain copyright material including books and plays for broadcasting purposes. The Bill proposes that the copyright aspects of the Licence Scheme will be consolidated into the broader exception for institutions assisting persons with a disability.

The corresponding question is -

Q 3: Will the proposed exception allow providers of print disability radio to continue operating as they currently do?

In dealing with the Copyright Regulations the Department states that it

is separately preparing amendments to Copyright International Protection Regulations to include a positive statement that it is not an infringement of copyright to exchange literary and artistic works across borders for the purposes of compliance with the Marrakesh Treaty. The Department is also preparing amendments to the Copyright (International Protection) Regulations 1969 to ensure authorised users of the disability scheme can circumvent technological protection measures where necessary.  

Regarding Preservation Copying (cheers are heard from librarians and archivists) the  explanation is -

The proposed amendments contained in the Bill simplify and streamline the existing preservation copying provisions to allow libraries, archives and ‘key cultural institutions’ greater flexibility in copying and digitisation of copyright material, whether published or unpublished, to preserve their collections.

The proposed preservation exceptions apply to public libraries and archives, parliamentary libraries and prescribed key cultural institutions. It is envisaged that this will generally include a library or archives that forms part of an educational institution, but that there may be library or archival material held by an educational institution (or another institution such as a museum) that is not accessible to the public either directly or through interlibrary loans. This means that, potentially, the exception would not apply to library or archival material held by an educational (or other type of) institution that is not accessible by the public.

The proposed preservation exceptions contains the following elements: a

a) It harmonises the provisions for libraries, archives and key cultural institutions. For example, libraries and archives will no longer be required to wait for published material to be damaged or deteriorate, or to have been lost or stolen, before making a preservation copy.

b) There will be no limit on the number, version or format of copies that can be made for preservation purposes, consistent with best practice.

c) No specific commercial availability test will be imposed, but the exception does require that the authorised officer is satisfied that a copy of the material cannot be obtained in a version or format that is required for preservation.

d) Digital preservation and research copies will be required to be made available to people at libraries, archives or key cultural institutions, but on a restricted basis so that a person cannot electronically copy the material or communicate it to the public.

These provisions are intended to complement other provisions in the Act relating to use of copyright material in libraries and archives.

The question is -

Q 4: Should the proposed preservation provisions apply to a library or archives that forms part of an educational (or other type of) institution if its collection is not available to the public?

In relation to Educational Measures Statutory Licences

The proposed amendments consolidate and simplify the existing statutory licences for the use of copyright material by the educational sector.

The proposed new statutory licence would provide that copyright is not infringed by the copying and communication of work by educational institutions provided a number of conditions are met:

a) A remuneration notice, given by or on behalf of the body administering an educational institution, to the relevant collecting society, is in force.

b) The copying or communication is carried out solely for the educational purposes of the institution or of another educational institution covered by the remuneration notice.

c) The amount that is copied or communicated does not unreasonably prejudice the legitimate interests of the owner of the copyright of the work.

d) The copying or communication complies with any other terms as are agreed between the body administering the educational institution and the collecting society, or any other determination made by the Copyright Tribunal.

The proposed amendments would make similar provision for broadcasts by education institutions, allowing use of broadcasts provided these conditions were met and that the use complies with any other terms as are agreed between the body administering the educational institution and the collecting society specifically relating to the broadcasting.

The proposed amendments seek to extend the meaning of a broadcast to cover:

a) A communication of the content of a free-to-air broadcast by the broadcaster making the content available online at or after the time of the broadcast.

b) A communication by electronic transmission using the internet of the content of a broadcast at, or at substantially, the same time as the broadcast.

The proposed amendments also consolidate the existing provisions relating to the Part VA and VB statutory licences.

That is reflected in the fifth through questions - 

Q 5: Does the proposed statutory licence appropriately extend the coverage of broadcasts to the types of broadcast content used by educational institutions?

Q 6: Does the Copyright Tribunal have adequate jurisdiction to determine all necessary matters?

Q 7: Will the proposed statutory licence reduce the administrative burden on parties to the licence?

Q 8: Do the proposed transitional provisions adequately protect current arrangements for the life of their term?

Q 9: While the transitional provisions provide that existing notices, agreements and determinations will continue, the new provisions would govern these existing arrangements. Are there any arrangements that the new provisions should not apply to?

In dealing with 'Exam Copying' (perhaps most pertinent for some students regarding online plagiarism checkers such as Urkund) the Department states

The current examination copyright exception in section 200(1)(b) is not broad enough to enable examinations to be conducted online. The proposed amendment will remedy this.

Most importantly for some entities, the Bill deals with Safe harbour  before addressing duration of protection -

The proposed amendments expand the current ‘safe harbour’ provisions in the Act to cover a broader range of entities, including educational institutions and other online services (such as online search engines, bulletin boards and cloud storage services).

The proposed definition of a service provider reflects the definition of a service provider in Article 17.11.29(xi) of the Australia-United States Free Trade Agreement and Article 18.81 of the Trans Pacific Partnership Free Trade Agreement.

Regarding the Term of Protection the Department states -

 Currently, the Copyright Act provides for different copyright terms for published and unpublished works. Where copyright works are unpublished they remain in copyright in perpetuity and so their productive uses may be lost.

The proposed amendments seek to harmonise the copyright term for published and unpublished works by creating a new general protection period of life plus 70 years that does not differentiate between published and unpublished works.

The proposed general term of protection would apply to works made before 1 January 2018 that remain unpublished at that date. The delay in commencement of these provisions would enable a copyright owner of a work made by a deceased author to publish before commencement, which would extend the term of protection under the existing duration provisions. When the term of protection for unpublished works ends, this does not require or cause previously unpublished works to become published. It would still be a decision for the person who has physical possession of the work to decide whether they wish to publish the work.

Unknown authors

The proposed amendments also provide a protection period of 70 years from the year in which a work is ‘made’ (i.e. making plus 70 years) where the identity of the author is ‘generally unknown’ during this 70 year period. This will cover works currently referred to in s34 of the Act as ‘anonymous or pseudonymous’ works. However, if the work is published within 50 years of its making, the proposed amendments provide a protection period of first made public plus 70 years. Where the author becomes known in the relevant protection period, copyright duration would default to the general protection period of life plus 70 years.

Copyright material made or first published by the Crown

It is also proposed to amend section 180 of the Act to provide a set term of copyright for works owned by the Crown of 50 years from the year in which the material is made (i.e. making plus 50 years), whether the material is published or unpublished.

The question is

Q 10: The current proposal only applies to the duration of copyright in works. This could be extended to films and sound recordings. With this in mind, and given that the Act currently does not use the concept of the date of ‘making’ a film or sound recording for the purposes of determining duration, views are sought on the common industry understandings of when a commercial film or sound recording is made.

Genomic Beacons

Yet another genomic privacy article, this time 'Privacy Risks from Genomic Data-Sharing Beacons' [PDF] by Suyash S. Shringarpure and Carlos D. Bustamante in (2015) 97(Nov) The American Journal of Human Genetics 1–16.

The authors indicate

The human genetics community needs robust protocols that enable secure sharing of genomic data from participants in genetic research. Beacons are web servers that answer allele-presence queries—such as ‘‘Do you have a genome that has a specific nucleotide (e.g., A) at a specific genomic position (e.g., position 11,272 on chromosome 1)?’’—with either ‘‘yes’’ or ‘‘no.’’ Here, we show that individuals in a beacon are susceptible to re-identification even if the only data shared include presence or absence information about alleles in a beacon.Specifically, we propose a likelihood-ratio test of whether a given individual is present in a given genetic beacon. Our test is not dependent on allele frequencies and is the most powerful test for a specified false-positive rate. Through simulations, we showed that in a beacon with 1,000 individuals, re-identification is possible with just 5,000 queries. Relatives can also be identified in the beacon. Re-identification is possible even in the presence of sequencing errors and variant-calling differences. In a beacon constructed with 65 European individuals from the 1000 Genomes Project, we demonstrated that it is possible to detect membership in the beacon with just 250 SNPs. With just 1,000 SNP queries, we were able to detect the presence of an individual genome from the Personal Genome Project in an existing beacon. Our results show that beacons can disclose membership and implied phenotypic information about participants and do not protect privacy a priori. We discuss risk mitigation through policies and standards such as not allowing anonymous pings of genetic beacons and requiring minimum beacon sizes.

They go on to comment

In the coming decade, a great deal of human genomic data, along with linked phenotypes in electronic health records, will be collected in the context of health care. A major goal of the human genomics community is to enable efficient sharing, aggregation, and analysis of these data in order to understand the genetic contributors of health and dis- ease. Previous large-scale data-sharing approaches have had limited success because of the potential for privacy breaches and risks of participant re-identification. Homer et al. and others showed that subjects in a genome- wide association study could be re-identified with the use of allele frequencies, resulting in the removal of publicly available allele-frequency data.

The Beacon Project by the Global Alliance for Genomics and Health (GA4GH) aims to simplify data sharing through a web service (‘‘beacon’’) that provides only allele-presence information. Users can query institutional beacons for information about genomic data available at the institution. Queries are of the form ‘‘Do you have a genome that has a specific nucleotide (e.g., A) at a specific genomic position (e.g., position 11,272 on chromosome 1)?’’ and the beacon server can answer ‘‘yes’’ or ‘‘no.’’ Beacons are intended to be easily set up and to allow data sharing while protecting participant privacy. By providing only allele-presence infor- mation, beacons are safe from attacks that require allele fre- quencies.

However, a privacy breach from a beacon would be troubling given that beacons often summarize data with a particular disease of interest. For instance, identifying that a given genome is part of the SFARI beacon, which contains genomic data from families with a child affected by autism spectrum disorder, means that the individual belongs to a family where some member has autism spectrum disorder. Thus, beacons could leak not only membership information but also phenotype information. Although genetic privacy is protected to some extent by the Genetic Information Nondiscrimination Act (GINA), the offered protections are limited, and GINA does not apply to long-term care insurance, life insurance, disability insurance, or other special cases.

Therefore, all data-sharing mechanisms, including beacons, must protect participant privacy. To examine the question of re-identification in a beacon, we have developed a likelihood-ratio test (LRT) that uses allele presence or absence responses from a beacon to predict whether a given individual genome is present in the beacon database. Our approach is independent of allele fre- quencies. The statistical properties of the LRT guarantee that it is the most powerful test for this problem. A variation of our LRT can detect relatives of the query individual in the beacon. Our results suggest that anonymous-access beacons do not protect individual privacy and are open to re-identification attacks. As a result, they can also disclose phenotype information about individuals whose genomes are present in the beacon.

 'On Non-cooperative Genomic Privacy' by Mathias Humbert, Erman Ayday, Jean-Pierre Hubaux and Amalio Telenti in FC 2015: Financial Cryptography and Data Security (Springer, 2015) 407-426 comments

 Over the last few years, the vast progress in genome sequencing has highly increased the availability of genomic data. Today, individuals can obtain their digital genomic sequences at reasonable prices from many online service providers. Individuals can store their data on personal devices, reveal it on public online databases, or share it with third parties. Yet, it has been shown that genomic data is very privacy-sensitive and highly correlated between relatives. Therefore, individuals’ decisions about how to manage and secure their genomic data are crucial. People of the same family might have very different opinions about (i) how to protect and (ii) whether or not to reveal their genome. We study this tension by using a game-theoretic approach. First, we model the interplay between two purely-selfish family members. We also analyze how the game evolves when relatives behave altruistically. We define closed-form Nash equilibria in different settings. We then extend the game to N players by means of multi-agent influence diagrams that enable us to efficiently compute Nash equilibria. Our results notably demonstrate that altruism does not always lead to a more efficient outcome in genomic-privacy games. They also show that, if the discrepancy between the genome-sharing benefits that players perceive is too high, they will follow opposite sharing strategies, which has a negative impact on the familial utility.

'Family tree and ancestry inference: is there a need for a ‘generational’ consent?' by Susan E. Wallace, Elli G. Gourna, Viktoriya Nikolova and Nuala A. Sheehan in (2015) 201516 BMC Medical Ethics87 comments

Genealogical research and ancestry testing are popular recreational activities but little is known about the impact of the use of these services on clients’ biological and social families. Ancestry databases are being enriched with self-reported data and data from deoxyribonucleic acid (DNA) analyses, but also are being linked to other direct-to-consumer genetic testing and research databases. As both family history data and DNA can provide information on more than just the individual, we asked whether companies, as a part of the consent process, were informing clients, and through them clients’ relatives, of the potential implications of the use and linkage of their personal data. 

Methods 

We used content analysis to analyse publically-available consent and informational materials provided to potential clients of ancestry and direct-to-consumer genetic testing companies to determine what consent is required, what risks associated with participation were highlighted, and whether the consent or notification of third parties was suggested or required. 

Results 

We identified four categories of companies providing: 1) services based only on self-reported data, such as personal or family history; 2) services based only on DNA provided by the client; 3) services using both; and 4) services using both that also have a research component. The amount of information provided on the potential issues varied significantly across the categories of companies. ‘Traditional’ ancestry companies showed the greatest awareness of the implications for family members, while companies only asking for DNA focused solely on the client. While in some cases companies included text recommending clients inform their relatives, showing they recognised the issues, often it was located within lengthy terms and conditions or privacy statements that may not be read by potential clients. 

Conclusions 

We recommend that companies should make it clearer that clients should inform third parties about their plans to participate, that third parties’ data will be provided to companies, and that that data will be linked to other databases, thus raising privacy and issues on use of data. We also suggest investigating whether a ‘generational consent’ should be created that would include more than just the individual in decisions about participating in genetic investigations.

Public Health Messages

The Tasmanian Health Minister has sent a brave and positive public health message through a proposal to raise the minimum legal smoking age to 21 or even 25.

The Minister announced "an ambitious goal for Tasmania to have the healthiest population in Australia by 2025", commenting

Addressing Tasmania’s high rates of chronic disease and health and risk factors such as smoking, obesity, poor nutrition, low physical activity levels and risky alcohol consumption is a priority of our draft Consultative Healthy Tasmania Five Year Strategic Plan. 

The announcement states

The Consultation Draft outlines that smoking and obesity will be priorities under the first five year strategic plan. This is where evidence tells us we can make a significant change in population health outcomes.

The Government has included ideas on improving nutrition and access to healthy food, improving physical activity and recreational infrastructure, developing community-led action plans and taking a ‘life stages’ approach of developing healthy habits in kids and supporting older people to remain healthy and independent.

The Consultation Draft also proposes raising the minimum legal smoking age. Current laws make it illegal to smoke under the age of 18; but there would be significant health benefits associated with raising the legal age to 21 or 25.

International evidence supports raising the minimum legal smoking age as a means of targeting the most at-risk age category for smoking uptake. Studies show that most smokers take up the habit before the age of 25. There would likely be significant health benefits for the community and savings to the health system over time if the rate of people taking up smoking was reduced. 

The draft Plan [PDF] indicates

Potential Future Initiatives To Target Smoking

Tobacco smoking is one of the most serious public health challenges we continue to face as a society, despite substantial progress in recent decades. The Government is committed to thinking boldly about how we can better address this challenge.

The Tasmanian Government sees a clear need to target the smoke free message and related programs if we are going to significantly reduce rates of smoking.

The focus should be on reducing uptake of smoking amongst young people, smoking during pregnancy and reducing smoking rates. This is also an active agenda for QUIT Tasmania at the Cancer Council, the Heart Foundation Tasmania, PHT and the Tobacco Control Coalition. Earlier in 2015, the Government commissioned a Discussion Paper, Options for a Public Health Response to e-Cigarettes. A report has been prepared for the Tasmanian Government based on that feedback, which will be considered as part of development of the final Healthy Tasmania Strategic Plan.

Current smoking statistics

The National Drug Strategy Household Survey 2013, in comparing smoking rates of differing age groups based on self-reported data, found that 3.4 per cent of 12-17 year olds in Australia are daily smokers. Amongst 18-24 year olds, 13.4 per cent reported themselves to be daily smokers. This represents a 10 per cent increase – the largest increase between successive groups across the entire age spectrum.

Tasmania’s statistics are stark - in 2011-12, over 30 per cent of young Tasmanians aged 18-24 years were current (daily or occasional) tobacco smokers, compared with about 7 per cent of older Tasmanians aged 65 years and over. Further, in 2013, 15.1 per cent of all mothers and 33.4 percent of teenage mothers smoked. Only 1.5 per cent of women who reported smoking during the first 20 weeks of pregnancy did not report smoking during the second 20 weeks.

Tobacco smoking is recognised as one of the largest preventable causes of death and disease in Australia. In 2004-2005, smoking was estimated to cost the country around $31.5 billion in social and economic costs, including to the health care system. During the same period, smoking resulted in over 750,000 days spent in hospital and $670 million in hospital costs

Smoke-free generation

The Hon. Ivan Dean MLC first tabled the Public Health Amendment (Tobacco Free Generation) Bill in late 2014 in the Legislative Council. This has led the way on innovative thinking about how to better address the challenge of reducing smoking rates. The Government commends the intention of that Bill, as any initiative aimed at reducing smoking rates is laudable. However, the Government has consistently held concerns about its complexity and likely efficacy, which has prompted bold thinking about how we could achieve significant reductions in smoking rates in a practical, less complex way.

Potential Future Initiative No 6:

Smoking cessation in pregnancy improves the health of the unborn child. A Non-Government Organisation partners with a Primary Health Network and the Tasmanian Health Service on a program to reduce smoking rates in pregnancy. ccccccc The program identifies all women who are smoking at the diagnosis of the pregnancy and provides brief intervention in general practice, strengthens smoking cessation skills in doctors and midwives in antenatal clinics, and uses the patient information management system to ensure that clinical guidelines regarding smoking cessation in pregnancy are systematically implemented.

Such nudging is unlikely to attract major criticism. There will be more debate about raising the smoking age -

Potential Future Initiative No 7: Raising the Minimum Legal Smoking Age

Extending the Minimum Legal Smoking Age (MLSA) beyond 18 through amendment to the Public Health Act 1997 could provide an opportunity to enact some far-reaching change. While it would be a national first, there is international research and practical evidence to support that increasing the smoking age and preventing uptake of smoking can lead to significant reductions in smoking rates with positive life-time effects.

Evidence for raising the MLSA

In 2015, the US Institute of Medicine (IoM) released an extensive report investigating the likely efficacy of increasing the national MLSA. The study reported that approximately 90 per cent of adult daily smokers in the US reported their first use of cigarettes before reaching 19 years of age, while almost 100 percent begin before the age of 25. It used mathematical modelling to estimate the relative effect of raising the MLSA from 18 to 19, 21 or 25.

The researchers concluded that if the MLSA were raised now, by the time today’s teenagers reached adulthood, within that cohort there would be a 3 per cent overall reduction in smoking prevalence if the MLSA were raised to 19, a 12 per cent overall reduction in smoking prevalence if raised to 21 and a 16 per cent overall reduction in smoking prevalence if raised to 25. These benefits would presumably carry through over time as a greater proportion of the population had been subject to such a law.

In 2015, Hawaii became the first US state to pass legislation to raise the MLSA to 21, which will take effect from 1 January 2016. Similar debates have recently been taking place at the state level in Washington and California.

While it may take some time before the full impact on smoking rates in Hawaii is able to be measured, a number of other US municipalities and counties have also raised the MLSA to 21, including New York City. The first city to do so was Needham, Massachusetts in 2005. Data from Needham showed that following this, tobacco use among high school students was reduced almost by half, and the rate of frequent tobacco use fell by 62 per cent – significantly faster than surrounding areas.

In the IoM study, one of the models used projected that if the MSLA were raised to 21 across the United States, there would be approximately 223,000 fewer premature deaths, 50,000 fewer deaths from lung cancer and 4.2 million fewer years of life lost for those born between 2000 and 2019.

Practical considerations

Any move to increase the MLSA in Tasmania would need to consider how to treat those within the relevant age cohort who are currently legally able to smoke at present, as well as those currently underage but who will attain majority before any change came into effect. One option would be to enact transitional arrangements for a defined period in order to promote and socialise new arrangements. However, the extent to which any agreed increase to the MLSA is delayed would represent continued increased risk of smoking addiction to the relevant age cohort.

There is also the matter of how such a law should treat international and interstate tourists coming to Tasmania under a higher MLSA. We need to consider whether tourists should be required to observe Tasmanian laws, as is the case with other laws which differ from other jurisdictions, or whether they might be exempted for purchasing and/or possession and use.

There is also the matter of what impact such a law may have on retailers. We can assume that there may be an initial modest impact on retail trade, which could increase over time with progressive decreases in overall smoking rates. Having a transitional or ‘phase-in’ period may have the added benefit of allowing businesses time to model and adjust for any anticipated impact on trade.

The draft accordingly asks several questions

Do you support increasing the minimum legal smoking age to 21? If so, do you support a phase- in arrangement with respect to those currently legally able to smoke in the 18-20 age cohort?

Do you support increasing the minimum legal smoking age to 21, and subsequently increasing it to 25 later, based on evidence of impact?

Do you support increasing the minimum legal smoking age to 25? If so, do you support a phase-in arrangement with respect to those currently legally able to smoke in the 18-24 age cohort?

What impact would there be on tourists and visitors to the State in increasing the minimum legal smoking age and how could these be alleviated?

Do you support maintaining the status quo? If so, what are the reasons?

US Genetic Discrimination and Objectivity

'How Genetics Might Affect Real Property Rights' by Mark and Laura Rothstein in (2016) 44(1) Journal of Law, Medicine and Ethics comments

New developments in genetics could affect a variety of real property rights. Mortgage lenders, mortgage insurers, real estate sellers, senior living centers, retirement communities, or other parties in residential real estate transactions begin requiring predictive genetic information as part of the application process. One likely use would be by retirement communities to learn an individual’s genetic risk for Alzheimer’s disease. The federal Fair Housing Act prohibits discrimination based on disability, but it is not clear that it would apply to genetic risk assessments. Only California law explicitly applies to this situation and there have been no reported cases.

'The Emperor’s New Genes: Science, Public Policy, and the Allure of Objectivity' by Ruha Benjamin in (2015) 661 Annals of the American Academy of Political and Social Science 131-142 addresses

the politics of genomics through three diagnoses: The first, diagnosing objectivity, discusses how researchers involved in a large-scale population mapping initiative distinguish genomics as relatively objective, compared to other forms of knowledge production. The second case, diagnosing nationality, examines an attempt by the UK Border Agency to use genetic ancestry testing to vet asylum claims. The third case, diagnosing indigeneity, considers how indigenous councils in southern Africa engage genomic science in their struggle for state recognition and rights. I argue that genomics’ allure of objectivity lends itself to such diagnostic attempts among both powerful and subaltern social actors and suggest that developing “technologies of humility” may provide one safeguard against the increasing uptake of genomics as the authority on human difference.

 Benjamin comments

The specter of state-sanctioned eugenics can serve as a distraction from more routine, seemingly benign or even beneficent, scientific practices that are taken up in the policy arena. When attention is focused too narrowly on eugenic boogiemen, genomic saviors that seem to tell us a more true and complex story of population history, may elude critical analysis. A moratorium on the binary between good versus bad science as a mode of popular and scholarly critique is necessary, because the distinction sidesteps how much of what we deem as “bad” today was produced by respected researchers based in prominent institutions of the time. The normative distinction causes observers and analysts alike to be wary of practices that appear obviously bad and are often sensationalized (e.g., Tuskegee syphilis experiment), while overlooking normal workaday science produced with the help of multi-million-dollar grants by award-winning researchers vetted through peer-review. Although the critical response by the population genetics community towards A Troublesome Inheritance (2014a) by Nicholas Wade was celebrated by many who have been calling for greater reflexivity in the field, it underscores this binary: a letter signed by more than 130 researchers said that Wade had “misappropriated” their research to “support arguments about human societies” as it relates to IQ, political institutions, and economic development.  Certainly, misuse is an issue, but what also seems to fuel the uptake of genomics in support of such claims is the field’s allure of objectivity.

The hazards of workaday genomics, I suggest, have more to do with this allure than with its potential to construct hierarchies of superior and inferior groups. In this context, focusing on proponents of biological determinism a la Wade may serve as a distraction from the dexterity of genomics, in which different social actors draw on its diagnostic allure to make authoritative claims about group boundaries.

In framing this discussion as a set of interconnected processes of diagnosis, I draw on work that challenges the use of genetic ancestry testing as a diagnostic of group membership. For example, Bolnick et al.’s (2007) caution that

when an allele or haplotype is most common in one population, companies often assume it to be diagnostic of that population. This can be problematic because high genetic diversity exists within populations and gene flow occurs between populations. Very few alleles are therefore diagnostic of membership in a specific population, but companies sometimes fail to mention that an allele could have been inherited from a population in which it is less common. (p. 400, emphasis added)

While the critique above is directed at the private sphere (i.e., companies that capitalize on the willingness of consumers to pay for testing), the discussion here is concerned with how such tests are taken up in public policy where the parameters of political and social inclusion are being established or challenged. In the process of diagnosing group membership, genomic tools are deployed by varied social actors to make competing claims about who belongs and who does not. Extending Pollock’s (2012) application of the Derridean concept of pharmakon to race-based medicine—as both remedy and poison—the discussion here illustrates the normative dexterity of genomic claims in public policy (Benjamin 2015). It draws three examples together through the idiom of diagnosis, to con-ceptualize the connection between the authoritative representation of the field and its political circulation. The first case, diagnosing objectivity, discusses how representations of a large-scale population mapping initiative distinguish the objectivity of genomics from other forms of knowledge production. The second case, diagnosing nationality, examines an attempt by the UK Border Agency to use genetic ancestry testing to vet asylum claims. The third case, diagnosing indigeneity, considers how indigenous councils in southern Africa engage genomic science in their struggle for state recognition and rights. I argue that the field’s allure of objectivity lends itself to such diagnostic attempts by powerful and subaltern social actors alike. Finally, I suggest that developing “technologies of humility” (Jasanoff 2007) may provide one safeguard against the increasing uptake of genomics as a means to arbitrate the parameters of political and social inclusion.

In discussing the 'diagnosis of nationality' [p 134] Benjamin states

In 2009, the UK Border Agency (UKBA) initiated the Human Provenance Pilot Project (HPPP), with the aim of using genetic ancestry testing and isotope analysis to vet asylum claims. If, over the course of a standard interview, caseworkers grew suspicious of an applicant’s story, they would request samples of saliva, nails, and hair. The primary targets of the project were East Africans. Somali applicants escaping persecution were eligible for asylum, so if the tests indicated someone was from Kenya—a phenomenon dubbed “nationality swapping”—he or she was scheduled for deportation. The entire process was essentially an experiment. Yet over the course of the project, actual cases were vetted using these methods. A letter from the deputy director of the project, Phil Douglas, stated that “all samples will be provided voluntarily,” but caseworkers were encouraged to regard refusal to submit samples with suspicion. The official protocol instructed:

If an asylum applicant refused to provide samples for the isotope analysis and DNA testing the case owner could draw a negative inference as to the applicant’s credibility. … There must be other compelling evidence which also clearly demonstrates that the applicant has attempted to conceal information or mislead the UK Border Agency. It must not be stated within the RFRL [Reasons for Refusal Letter] in isolation and must certainly not be stated as a primary reason for refusing the applicant’s asylum claim.

Following the protests of refugee advocates and the work of journalist John Travis—and not through any regulatory or oversight governing body—the project came under widespread scrutiny. In the process, academic scientists expressed shock and disgust, insisting that the techniques used could not diagnose nationality in the way that the project assumed. David Balding, a population geneticist at Imperial College London, noted that “genes don’t respect national borders, as many legitimate citizens are migrants or direct descendants of migrants, and many national borders split ethnic groups” (Travis 2009).

Mark Thomas, a geneticist of University College London, who called the HPPP “horrifying,” contended that determining a person’s ancestry—as distinct from nationality—is more problematic than many believe. “[Mitochondrial] DNA will never have the resolution to specify a country of origin. Many DNA ancestry testing companies have sprung up over the last 10 years, often based on mtDNA, but what they are selling is little better than genetic astrology,” he said. “Dense genomic SNP data does have some resolution … but not at a very local scale, and with considerable errors” (Travis 2009). Likewise, Alec Jeffries, one of the pioneers of human DNA fingerprinting, wrote,

The Borders Agency is clearly making huge and unwarranted assumptions about population structure in Africa; the extensive research needed to determine population structure and the ability or otherwise of DNA to pinpoint ethnic origin in this region simply has not been done. Even if it did work (which I doubt), assigning a person to a population does not establish nationality—people move! The whole proposal is naive and scientifically flawed. (Travis 2009)

An isotope specialist at Durham University, Janet Montgomery, explained that “unless the border between Somalia and Kenya represented some major geological or hydrological division, I cannot see how isotopes will discriminate between people living there let alone living at/on the border” (Silverstein 2011). Montgomery specified, “Isotopes do not respect national borders or convey some inherent national attribute. They are not passports” (Silverstein 2011).

Despite such severe criticism from the scientific community, the HPPP did not initially shut down; nor did it rule out the possibility that it would reintroduce a similar initiative in the future. In their own defense, representatives of the Border Agency insisted that only asylum-seekers who had already failed linguistic tests (another contested method of determining nationality) would be asked to provide mouth swabs, hair, and nail samples. It also released the following written response to scientific criticisms:

Ancestral DNA testing will not be used alone but will combine with language analysis, investigative interviewing techniques and other recognized forensic disciplines. The results of the combination of these procedures may indicate a person’s possible origin and enable the UKBA to make further enquiries leading to the return of those intending on abusing the U.K.’s asylum system. This project is working with a number of leading scientists in this field who have studied differences in the genetic backgrounds of various population groups. (Travis 2009, emphasis added)

Several prominent scientists, who had been interviewed by Travis, said they suspected that private labs that were under much less regulatory oversight had been involved in the project. And while the UKBA has since tried to downplay the significance of the project, in the words of Pearson, “It’s peoples’ lives we’re dealing with.”

The idea that the HPPP was voluntary conceals the threat of deportation if applicants did not consent to testing. It is coercive to say one has a choice, when one of those choices is automatically penalized. As Tutton, Hauskeller, and Sturdy (2014) explain, “In the UK, official and popular attitudes to those who request sanctuary have become dominated by a hermeneutic of suspicion. Public and policy discourses portray asylum seekers as mostly ‘bogus’ refugees seeking admission to the country for economic, not humanitarian, reasons” (p. 739).

The quest for scientific tools to determine ancestry and arbitrate group mem-bership continues apace toward a variety of political and biomedical ends. The near uniform criticism on the part of scientists toward the UK project serves to highlight a key feature of the underlying science—its refusal to adhere to “terms of use” in so far as the UKBA was unwilling to completely shut down the project. Furthermore, essential for this discussion is that

such technologies of identity do not simply offer more objective means of confirming or disconfirming conventional identity claims. They actually redefine the social categories of identity on which immigration and asylum decisions are based. … The HPPP stands as a salutary warning of the ways in which supposedly objective technologies of identifi-cation are increasingly being used at international borders as a way of further disempow-ering the already vulnerable. (Tutton, Hauskeller, and Sturdy 2014, 749)

But due to the dexterity of the field, supporting as it does competing ideas about peoplehood and belonging, it has also been enrolled in initiatives that seek to empower groups that have been historically dispossessed, as the next section illustrates. The latter, as I argue, should attract as much careful analysis as the HPPP, because of the way that the authority of genomics may displace other forms of group-making and political mobilization.