The genomics
revolution in the digital era: legal and ethical issues.
Since
the completion of the human genome project in 2003, a project which has made it
possible to understand the structure of the genome, gene sequencing
technologies have become more efficient and less expensive. The sequencing of
the genome, complete or partial, is an undeniable scientific advance.
The
speed of sequencing has increased dramatically - it is now referred to as
'super high throughput' sequencing - and at the same time costs have dropped:
which required thirteen years of work and an investment of $ 3 billion during
the process. of the 2000s with the “Human Genome” project is now achievable in
one hour for less than 1,000 euros. Consequently, the development of
bioinformatics and of banks that store and analyze genetic data on a large
scale favors the development of predictive genetics: genetic tests aimed at
detecting in an individual the risk of monogenic diseases (due to alteration of
a specific gene). It has therefore become easier to explore an individual's
genome and identify genes or sequences responsible for certain diseases.
Today, Genomic data present an enormous
resource for improving people's lives, including health, education, and
justice. And the value of genomic data is also recognized by the commercial
world, such as pharmaceutical, insurance, marketing, and data processing
businesses. The current value of the Genomic data market is difficult to evaluate,
but several indicators already suggest that it is high and growing. They have
created a world where: enormous information on people’s past, present, and
future can be extracted from DNA alone. This revolution heralds a new era and
our entry into the digital era has brought about rapid and profound changes and
upheavals in many ways in our individual and collective lives.
These
developments reveal new social challenges and confront us with ethical
dilemmas. This is the reason why, since 2015, research has begun to address the
risks of misusing genetic data, such as issues of privacy, including
electronic health records, genetic tests in clinical settings, identification of
individuals from anonymized data, and data processing and sharing, because
technologies such as modification of the human genome, for example, have the
potential to cure serious diseases or save lives, but could also generate new
forms of social inequalities and have unintended negative consequences. , in
the long term, for humanity. Not to mention, additional detailed personal
information is collected from numerous sources, such as mobile phones,
hospitals, and bank cards; this information is shared internationally among
numerous powerful private and State organizations; and use of this information
can be highly profitable for these organizations. In the face of all this, how
can we protect our data against misuse? How to prohibit and prevent genetic
discrimination? Aware that the world has become different, from what it was
three decades ago, in this regard, understanding the ethical and legal issues
which are raised by contemporary technologies seems essential, and they are
equipped to face the challenges that 'they pose. Obviously, in its dynamism,
our world has changed and today it brings a new reality that we must face it.
At
this rate, to adapt to these different realities, new provisions, and new laws must
be created and adopted in order to frame such advances. And to allow all of
humanity to take advantage of its advantages while reducing its risks
according to ethical principles.
