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Genomics: repairing public trust

The term “genomics” was first coined in 1986 by Tom Roderick, a geneticist from The Jackson Laboratory for Genomic Medicine, Connecticut. Since then, the field has vastly expanded, from sequencing the human genome to being able to investigate tumours at a single cell level. The benefits of genomics have already been observed across medicine, particularly in relation to cancer, where it has improved diagnosis, prognosis and treatment.

Nevertheless, several recent surveys have emphasised the lack of public trust. This is particularly apparent amongst minority and indigenous communities. As a result, the future progression of genomics is likely to be at risk unless greater public trust is earned.

The road that has led to our progression within genomics has not been easy. Moving forward, we will continue to face challenges on the road ahead. In order to be prepared for these challenges, we must acknowledge the past and learn from previous downfalls. In this blog, we explore some of the reasons as to why individuals and/or communities distrust genomics.

Eugenics

Eugenics is one of the most controversial topics associated with genomics. It is referred to as a set of beliefs or practices that aim to select for specific hereditary traits; thereby, ‘improving’ the genetic quality of a human population. While philosopher Plato was suggested to be the first person to promote this ideology, British scholar Sir Francis Galton first coined the term in 1883.

Popularisation

During the first half of the twentieth century, the study of eugenics began to propagate within the United States. The Eugenics Record Office was established during this time. It acted as a centre for research of eugenics and human heredity, and was also a repository for genetic data. The office claimed that most people who were considered ‘unfit’ (negative eugenics) were immigrants, minorities and the poor. Marriage laws within the United States changed, prohibiting interracial marriages and banning people with epilepsy from marrying. Between 1909 to 1979, around 20,000 sterilisations occurred within mental institutions across California. These institutions claimed to be protecting society from the offspring of people with mental illness.

Nazi Germany

The devastating impact of eugenics was seen during Nazi Germany and the reign of Adolf Hitler. Within his book, Mein Kampf, Hitler declared that non-Aryan races, such as Jews and gypsies, were inferior. He argued that to make sure the German gene pool stayed ‘pure’, action needed to be taken. By the 1940s, alongside the mass genocide of Jewish people, thousands of Germans with mental illnesses and physical disabilities were euthanised. It is estimated that eleven million people died during the Holocaust.

At the end of World War II, during the Nuremberg trials, a set of ethical research principles were created for human experimentation. The Nuremberg Code is still widely adopted today. Despite these historical events, ‘modern eugenics’ remains an ongoing issue of great debate.

Genetic engineering

In society today, genetic engineering is sometimes considered ‘modern eugenics’. With ongoing advancements in CRISPR and base editing technologies, the ability to manipulate an organism’s DNA has become more possible than ever. Nonetheless, genetic engineering has garnered a lot of concern and questions regarding the idea of ‘playing God’ and removing ‘undesirable traits’ from the population. Specifically, many individuals are concerned about where the line will be drawn around what is considered an ‘undesirable trait’.

Genetically modified crops

The emergence of genetically modified crops and food caused widespread debate. Media hype and conspiracy theorists fuelled concerns. Consumers were mainly apprehensive about the long-term effects of such crops on human health. Nonetheless, many farmers have widely adopted these genetically modified technologies. Across the globe, genetically modified crops are under regulation. These regulations vary between countries and on the intended use of each product.

‘Designer babies’

Genetic engineering is often associated with the term ‘designer babies’. This refers to a baby whose genetic makeup has been selected or manipulated to remove genes associated with disease. Editing embryos and germ cells is the subject of huge ethical debate. In many countries, strict regulations are in place that limit gene editing approaches to research. However, in 2018, He Jiankui and colleagues sparked widespread backlash and concern by using gene editing technology to create the first gene-edited babies. All three scientists responsible were jailed, yet the reckless affair has had damaging repercussions on the scientific community and public trust.

Jennifer Doudna, Professor at UCB and co-inventor of CRISPR-Cas9, stated:

“As the scientific community now works to establish stronger safeguards, He’s fateful decision to ignore the basic medical mantra of ‘do no harm’ and risk the unintended consequences will likely be remembered as one of the most shocking misapplications of any scientific tool in our history.”

In a recent report, a group of experts have since provided recommendations about the clinical applications of human germline genome editing, regarding the technique as too risky for current use.

Discrimination

Willingness to participate in studies is largely impacted by fear of genetic discrimination. Genetic discrimination refers to an individual being treated differently based on predisposed genetic mutations. A major concern is discrimination in insurance and employment. In the United States, for example, genetic discrimination is illegal according to the Genetic Information Non-discrimination Act (GINA). This act aims to protect individuals from genetic discrimination in both healthcare and employment.

Labelling

Genetic discrimination also encompasses a fear of being labelled based on your genotype. For example, a study published last year investigated the genetic basis of sexuality, revealing no reliable markers in predicting an individual’s sexuality. However, some researchers and LGBTQ+ advocates question the purpose of conducting such research, with fears that findings may be used to discriminate against such groups.

An individual’s genetic information can also be used as a means to justify behaviours. For example, in 1991, Stephen Mobley murdered a pizza store manager in the United States. His defence lawyers attempted to use genetic factors to defend Mobley. They cited research by Brunner et al. which identified an association between a point mutation in the MAOA gene and antisocial behaviour. They requested that Mobley be tested for this mutation, arguing that this might explain his actions. At the time, the judge stated that the law was not ready to accept such evidence and Mobley was subsequently executed in March 2005.

Dating app

More recently, Professor George Church and colleagues at MIT developed a novel genetics-based dating app last year, known as Digid8. Church believes this app could eliminate inherited diseases from humans. News of this app has caused concern, with some comparing it to eugenics. However, Church has insisted that this app would only address a subset of the most severe diseases, e.g. cystic fibrosis. Nevertheless, this development has led to debate regarding the opportunities of eliminating devastating illnesses versus the potential concerns about discrimination. Such debate is necessary and beneficial in order for genomics to progress.

Today

Outside of eugenics and genetic discrimination, the field of genomics still has its issues. An important issue is the disproportionate representation of minority communities within studies and clinical trials. This has been evident in the ongoing COVID-19 pandemic. Despite the disproportionate impact of COVID-19 on minority communities, COVID-19 clinical trials have failed to enrol diverse populations. In addition, it has become clear that Indigenous communities often see few of the benefits of genomic research, particularly due to the lack of ethnic diversity within genomic medicine. Without representation of all populations, genomics is at risk of widening inequalities within healthcare and preventing the benefits of genomic medicine for all.

As genomics becomes more data-driven, the need to develop public trust is critical. The Facebook-Cambridge Analytica data scandal in 2018 has had a detrimental impact on public trust regarding data sharing. This has been reflected in several recent surveys which have reported that most people are less willing to share their data, particularly with commercial end-users. The public are becoming more aware of the risks and consequences of data sharing, making it critical for the development of public standards that secure regulation and transparency of data use and sharing.

The road ahead

Information is vital to society. It can educate and inform, it can influence opinion, it can cause concern and it can instil happiness. Genetic information is no different.

We are vastly becoming a data-driven community, with people becoming more conscious and aware of their health and wellbeing and also their rights. The failings of our past should serve as a warning to ensure that modern genetic research is done with compassion, and not to discriminate.

The road ahead will not be easy. As technologies advance, our ability to utilise our genetic information will become more apparent. As a result, ethical and societal questions will arise that need to be handled with due care and consideration. In addition, determining what is considered beneficial for society will inevitably become blurred and heavily debated. However, we must be prepared for these obstacles and ensure that any future decisions are made with public interest in mind for all of the public.  

It is vital that we are prepared for the difficult conversations ahead and ensure that we listen to other people’s views. We must involve and support those who are marginalised and disadvantaged within society. Finally, we must retain a strong moral compass and not be afraid to speak out against wrongdoing.

People will not forget the past nor should they have to. However, it is important to acknowledge that although we cannot change the past, we can and must change the future.

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Ethics / Eugenics / genetic engineering

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