In "Revolutionary Road," mid-century American suburban man is so maddening because he is both a rank escapist and a conservative pragmatist: he has arrogated to himself twin rights that ought to be incompatible — to dream of escape (and have adulterous affairs, like Emma Bovary), while simultaneously dreaming of timid stability, like Charles Bovary.
It is time to apply these twin rights to internationally collaborative genomic and clinical data sharing.
And they must fulfill these twin rights, i.e. undertake an obligation to progressively make the rights a reality through infrastructural and institutional measures that promote data sharing.
These twin rights "to benefit from" and "to be recognized for" are neither self-evident nor promoted in the world of genomics.
They must protect these twin rights, i.e. pass laws or regulations that ensure that private non-State parties do not violate the rights, including a right of attribution of data contributors or producers.
Included were twin rights "to share in scientific advancement and its benefits" and "to the protection of the moral and material interests resulting from any scientific…production of which [a person] is the author" (Art. 27, United Nations 1948).
In this article, we argue that these little-developed twin rights, what we call the right "to benefit from" and "to be recognized for", have direct application to internationally collaborative genomic and clinical data sharing, and can be activated through an international code of conduct.
It is our contention that regulatory and governance design to enable global collaboration and realization of the twin rights "to benefit from" and "to be recognized for" requires an international code of conduct for genomic and clinical data sharing situated within a human rights framework.
While it may be true that individuals or communities cannot always directly enforce or invoke in a court of law the twin rights "to benefit from" and "to be recognized for," these rights exist nonetheless; States are legally bound to implement them and non-State parties are bound to respect them.
They must respect these twin rights, i.e. "respect the freedom of the scientific community and its individual members to collaborate with others both within and across the country's borders, including the free exchange of information, research ideas and results" (UNESCO 2009).
