Experts push for equity in Data Justice in Genomics and Health conference
As individuals we seem to become more concerned about our personal information with each new high-profile data breach. But aside from passwords and credit card details, how much thought have you given to the personal information and data that lies within your body?
Leading researchers, practitioners and advocates recently gathered to share their impassioned knowledge at the Data Justice in Genomics and Health conference, held at Monash Law Chambers.
The conference was presented by the Health Law research group in the Faculty of Law at Monash University. Health Law’s scholars have a diverse range of research interests and expertise within the broad field of socio-legal studies in health.
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“We are immensely grateful to have this opportunity to be engaged in dialogue with a number of our colleagues from the Global Alliance for Genomics and Health – in fact, the intent of this particular meeting is to foster collaboration,” established Associate Professor Calvin Ho.
Associate Professor Calvin Ho speaking at the opening of the Data Justice in Genomics and Health conference.
Speakers from Monash Law and other institutions addressed matters of equity and diversity in genomics for health as well as access to gene technologies – particularly for underrepresented populations.
The conference focused on issues surrounding AI genomics and stakeholder engagement, data and the use of genomics in newborn screening, and vaccine and pandemic justice.
Presenters took this opportunity to share their valuable insights into what's next on the regulatory and ethics agenda, offering better ways to promote justice and equity in global genomic research.
Diya Uberoi, Academic Associate at the Centre of Genomics and Policy and Senior Policy Analyst at Global Alliance for Genomics & Health (GA4GH) speaking at the Data Justice in Genomics and Health conference.
Call for trust and transparency within genomic research sharing policies
First to speak was Diya Uberoi, Academic Associate at the Centre of Genomics and Policy, as well as Senior Policy Analyst at Global Alliance for Genomics & Health (GA4GH).
Ms Uberoi highlighted the need for institutions to improve transparency in the conducting and sharing of genomic research, especially in the mitigation of inequity among researchers and the public.
“Transparency has to come not only from the top down, but also from the bottom up,” urged Diya Uberoi.
She voiced her concerns on power imbalances while critiquing the availability and accessibility of information shared by research institutions.
“It is important that institutions allow for citizens and researchers across the globe to be participating and to make meaningful contributions,” remarked Ms Uberoi.
Trust is at the heart of effective and responsible data sharing and Ms Uberoi highlighted the need to build and sustain trust between researchers and research institutions.
Co-chair of the conference, Professor Calvin Ho and Ms Uberoi both support GA4GH’s mission for equity. By developing standards and policies for genomic and health related data sharing, the organisation’s mission is to accelerate progress in the advancements of science and health.
“GA4GH’s framework is very much guided by the right to science and the need for everyone across the globe to have available access to the benefits of science and its developments,” advocated Ms Uberoi.
Associate Professor Ma’n Zawati from McGill University speaking at the Data Justice in Genomics and Health conference.
Therapeutic Web Portals as one-stop shops for health research data
Associate Professor Ma’n Zawati, of McGill University’s Faculty of Medicine, built on Ms Uberoi’s push for accessibility with the proposal of Therapeutic Web Portals.
“It is important because it creates a one-stop shop for information that is actually vetted and available, especially when it has clinical incidents,” expressed Mr Zawati.
Therapeutic Web portals are online platforms designed to share aggregate health research data, findings and information related to specific medical conditions.
“Our research calls for digital platforms to streamline research dissemination and collaboration between researchers and clinicians,” shared Mr Zawati.
“By centralising clinical and research information and making it widely available, it is a way to ameliorate inequities because the information will be consistent across all regions, not just in one place,” highlighted Mr Zawati.
Through fostering collaboration between researchers, institutions and patients, Mr Zawati offered insight into how Therapeutic Web Portals can help combat geographical inequities in the sharing of health research data.
Alexandra Saltis, Monash Law alumna and Manager of Regulation and Compliance at Victorian Assisted Reproductive Treatment Authority (VARTA) speaking at the Data Justice in Genomics and Health conference.
Reform in the regulation of assisted reproductive treatment
Opening the conference’s second session, Alexandra Saltis, Manager of Regulation and Compliance at Victorian Assisted Reproductive Treatment Authority (VARTA), spoke on emerging technologies in regards to regulatory reform in Assisted Reproductive Treatment (ART).
Referring to a 2018 report which reviewed the regulation of assisted reproductive treatment, Ms Saltis noted that although there are recommendations to strengthen regulation within the sector, important functions will be lost upon Parliament’s approval.
“These include the undertaking of public education in relation to assisted reproductive treatment and donor conception, monitoring programs and activities of assisted reproductive treatment, promoting research into causes and prevention of infertility, and monitoring developments in relation to treatments,” said Ms Saltis.
However, she pointed out that there has been no proposal to change the scope of treatments addressed or regulated by the Assisted Reproductive Treatment Act.
“You could say that the bill hasn't necessarily progressed in terms of its technical understanding of ART,” commented Ms Saltis.
“Regulators in this area will need to consider new developments, address emerging technologies, but also ensure adequate access to ART,” contended Ms Saltis.
Ms Saltis referenced the Fertility Society of Australia’s 10 Year National Fertility Roadmap which calls for reform at a nation-wide level. It outlines key considerations for regulators within the sector in order to address emerging technologies.
“This is something for the Australian government to consider, to allow for a reduction in regulatory burden, and to allow ART providers to conduct further research into the efficacy of various treatments,” said Ms Saltis.
Professor Ainsley Newson from University of Sydney speaking at the Data Justice in Genomics and Health conference.
Equity in the use of genomics in newborn screening
With the rapid development of health technology, Ainsley Newson, Professor of Bioethics at the University of Sydney, explored the move to genomics in newborn screening, addressing the risks and opportunities that are now at hand.
“The obvious difference, once we start thinking about gene based methods, is that we have a very easy and straightforward way to obtain a whole heap of sequence information,” Ms Newson remarked.
“It is a really interesting time in newborn screening because we might be seeing a change from a condition based approach to a technology first consideration. And that brings with it lots of interesting considerations.”
In reference to the ‘heel prick’ bloodspot test, a method of Newborn Bloodspot Screening (NBS), Ms Newson shared that Australia is one of the few countries that requests explicit consent to the test, as well as what happens with the data afterwards.
“It is a presumed public health intervention. Parents are ideally informed that it is happening,” revealed Ms Newson.
When it comes to data justice, NBS raises issues in relation to the storing and sharing of newborn bloodspot data, and ultimately countless individuals’ genomes.
“The number of conditions could go up into the high hundreds, even thousands. [Data issues include] the security measures that will apply to it and whether we should allow routine access to that information for research - including whether we should allow other bodies access to that information as well,” explained Ms Newson.
Acknowledging these issues, Ms Newson emphasised the great importance of being able to screen for serious conditions, but advised that irrelevant or burdensome treatment needs to be avoided in the process.
“We want to help newborns that might otherwise go on to develop a very serious condition, especially if we can do something about it,” expressed Ms Newson.
Associate Professor Deborah Gleeson from La Trobe University speaking at the Data Justice in Genomics and Health conference.
Global inequity on the COVID-19 vaccine front
In the final session of the conference, two speakers collaborated to address vaccine and pandemic justice, with regard to industry behaviour in the recent COVID-19 pandemic.
Deborah Gleeson, Associate Professor from La Trobe University, brought attention to the global COVID-19 vaccine inequity that has drastically impacted countries of low and middle income.
“50 percent of COVID-19 deaths in low and middle income countries are estimated. [They] would not have occurred if the vaccination rates had been equal to high income countries,” informed Ms Gleeson.
“While private pharmaceutical research was largely publicly funded, the industry retained rights over producing the vaccines, including things like the volume of doses and the prices charged and who would receive those vaccines,” revealed Ms Gleeson.
The industries responsible for supplying vaccines had effectively monopolised COVID-19 vaccines, preventing the sharing of IP rights that would allow more local and efficient vaccine production, and prioritising distribution to countries who could satisfy their product prices.
“One of the ways the impacted countries addressed this vaccine inequity was by proposing a waiver of the Trade-related Intellectual Property Right (TRIPS) agreement for many different types of IP, such as for vaccines, diagnostics and medical equipment,” shared Ms Newson.
James Schneid, Law Lecturer at Flinders University, reiterated the failure of the TRIPS agreement in fulfilling its objectives, however, he noted that international collaboration on the COVID-19 vaccine front was still possible.
“In March 2021, we saw a number of nations begin negotiations on or call for a pandemic treaty, which became the pandemic agreement,” reported Mr Schneid.
He shared that multiple versions of the treaty in response to industry behaviour have been produced since, yet they’re on hold until the treaty is reviewed in 2026.
The different treaty versions include responses to the issues mentioned by Ms Newson, which promote the increase of accessibility, transparency regarding IP, and overall reduction of inequity among disadvantaged groups.
“We can see that there are still some very important provisions which are contained within various versions of the pandemic agreement,” reassured Mr Shneid.
“However, there's been some watering down of the language, and it is really important that negotiators keep pushing for stricter, stronger requirements for access to benefit sharing, for technology transfer and for transparency,” urged Mr Schneid.
Equity and diversity in the future of genomics and health
The attendees of the Data Justice in Genomics and Health conference highlighted a path forward – where collaboration and innovation can lead to a healthier, more just future for all.
It is clear that the transformative potential of genomics in health technology must be embraced, but equitable stakeholder engagement must also be prioritised to ensure the diversity in the sector’s future.
The impassioned speakers who shared the importance of genomics in newborn screening, as well as those who spoke on vaccine and pandemic justice, reminded us that health equity is essential for global resilience.
The Data Justice in Genomics and Health conference was held on Friday 20 September, 2024.
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