Ni una más. International cooperation against gender-based discrimination: the femicide case in Ciudad Juárez, Chihuahua, Mexico

The femicide in Ciudad Juárez is a story made of extreme violence against women for different reasons, by different actors, under different circumstances, and following different behavioural patterns. All within a gender discrimination frame based on the idea that women are inferior, interchangeable and disposable according to the patriarchal hierarchy still present in Mexico, but strongly reinforced by a sort of conspiracy of silence provoked either by the high impunity rate, the governmental incompetence to solve the crimes, or the general indifference of the population. It is the story of hundreds of kidnapped, raped, in many cases tortured, and murdered young women in the border between Mexico and the United States. The murders first came into light in 1993 and up to now young women continue to “disappear” without any hope of bringing the perpetrators to justice, stopping impunity, convicting the assassins, and bringing justice to the families of the deceased girls and women. The main questions about femicide in Ciudad Juárez seem to be: why were they brutally assassinated?, why most of the crimes have not been solved yet?, why and how is Ciudad Juárez different from other border cities with the same characteristics?, which powers are behind those crimes in a city that implies mainly women as its labor force, and which has the lowest unemployment rate in the whole country? But there are also many other questions dealing more with the context, the Juarences’ lifestyles, the eventual hidden powers behind the crimes, the possible murderers’ reasons, the response of the local civil society, or the international community actions to fight against femicide there, among many other things, that are still waiting for an answer and that this paper will ‘narrate’ in order to provide a holistic panorama for the readers. But above all there is the need to remember that every single woman or girl assassinated there had a name, an identity, a family, a story to be told time after time and as many times as necessary, in order to avoid accepting these crimes just as statistics, as cold numbers that might make us forget the human tragedy that has been flagellating the city since 1993. We must remember as well that their deaths express gender oppression, the inequality of the relations between what is male and what is female, a manifestation of domination, terror, social extermination, patriarchal hegemony, social class and impunity. The city is the perfect mirror where all the contradictions of globalization get reflected. It is there where all the globalization evils are present and survive by sucking their women’s blood. It is a city where some concepts such as gender, migration and power are closely related with a negative connotation.

A conceptualisation of a governance model for biobanks in the digital society

Biobanks are key infrastructures in data-driven biomedical research. The counterpoint of this optimistic vision is the reality of biobank governance, which must address various ethical, legal and social issues, especially in terms of open consent, privacy and secondary uses which, if not sufficiently resolved, may undermine participants’ and society’s trust in biobanking. The effect of the digital paradigm on biomedical research has only accentuated these issues by adding new pressure for the data protection of biobank participants against the risks of covert discrimination, abuse of power against individuals and groups, and critical commercial uses. Moreover, the traditional research-ethics framework has been unable to keep pace with the transformative developments of the digital era, and has proven inadequate in protecting biobank participants and providing guidance for ethical practices. To this must be added the challenge of an increased tendency towards exploitation and the commercialisation of personal data in the field of biomedical research, which may undermine the altruistic and solidaristic values associated with biobank participation and risk losing alignment with societal interests in biobanking. My research critically analyses, from a bioethical perspective, the challenges and the goals of biobank governance in data-driven biomedical research in order to understand the conditions for the implementation of a governance model that can foster biomedical research and innovation, while ensuring adequate protection for biobank participants and an alignment of biobank procedures and policies with society’s interests and expectations. The main outcome is a conceptualisation of a socially-oriented and participatory model of biobanks by proposing a new ethical framework that relies on the principles of transparency, data protection and participation to tackle the key challenges of biobanks in the digital age and that is well-suited to foster these goals.