Luca Coscioni

In the early 1990s, Dr. Coscioni started to get involved in local politics in his native Viterbo as member of the city council; in 1996, while training himself for the New York Marathon, he was diagnosed with ALS, which, in five years, confined him to a wheelchair.

In 2000, Dr. Coscioni decided to bring his health situation to the general public as a political case, denouncing the lack of appropriate regulation and public funding to allow scientific research, in particular the one on embryonic stem cells, in Italy. In order to do that, in that same year, he was elected member of the General Council of a political organization affiliated with Italy’s NRP.

At the 2001 Italian parliamentary elections, Dr. Coscioni ran for the Chamber of Deputies in the same list of former European Commissioner Emma Bonino.

“It is democracy itself to be at stake when the pursuit of knowledge is denied, that is a never-ending resource for the survival of humanity, as a place of discussion and freedom on issues directly related to life, death, health and quality of life”

Luca Coscioni

On that occasion the Nobel Laureate for Literature Josè Saramago wrote him a message to add his support to the one expressed by scores of scientists and Nobelists, saying: “Perhaps the support of a mere writer like me will seem a little or a lot out of place in a list of scientific leaders who, with their names and their prestige, seal the words spoken by Luca Coscioni. In any case, my name is at your disposal, so that the light of reason and human respect can illuminate the gloomy spirits of those who believe themselves to be, still and always, the masters of their destinies. For a long time we waited for the day to break, we were exhausted by the waiting, until all of a sudden the courage of a man, rendered silent by a terrible disease, gave us renewed strength”.

Nobel laureate Ivar Giaever remembers Luca Coscioni

Although Dr. Coscioni was not elected to Parliament, he received the support of hundreds of scientists, physicians, patients as well as politicians and intellectuals, above all 57 Nobel laureates. Later in that year, a similar show of support accompanied his unsuccessful bid to become a member of the National Bioethics Committee.

In 2002, together with Emma Bonino and Marco Pannella, Luca Coscioni founded his association in order to promote freedom of scientific research, with particular attention to research on embryonic stem cells, a technique that was running the risk of being severely hindered by a draft bill before the Italian Senate.

After the adoption in February 2004 of the bill that strictly limited in vitro fertilization in Italy and prohibited research on human embryonic stem cells derived from supernumerary embryos (i.e. not to be implanted into the uterus), the association and the Italian Radical (also a member of the NRP) launched a referendum campaign to repeal it.

They gathered 500,000 signatures to support it.

The referendum was voted upon in June 2005: despite an overwhelming majority of those that voted supported the proposal to radically amend the law, the referendum did not reach the quorum of 50% votes necessary for being valid.

Over the Summer 2004, the ALC, together with the NRP, had launched a campaign to discourage the adoption of an UN convention to ban all forms of cloning and making no difference between reproductive and therapeutic cloning. Four months of international mobilization, coordinated with the US-based Coalition for the Advancement of Medical Research and the Genetics Policy Institute, were able to substantially diminish the proposal, which in February 2005 was transformed into a declaration and endorsed by some 80 UN members headed by the Vatican.

ALC and NRP appeal “against an international ban on human embryonic stem cell research for therapeutic purposes” gathered more than 1,500 signatures of members of national parliaments, academics and scientists. Among them 77 Nobel laureates supported this campaign. Also thank to this effort in 2005 the UN General Assembly opted for a non-binding declaration on human cloning instead of a binding convention, due to a divisive vote on the question of human reproductive cloning to be deemed different from therapeutic cloning.

A first meeting of the World Congress was convened in Rome at the City’s Capital Hill from the 16th to the 18th of February 2006 at the presence of scientists, researchers, politicians and advocates coming from all over Europe and the United States.

At that time the European Parliament was discussing the 7th Research Framework Programme (7FP) that would establish the allocation of the European funds for the period 2007-2013.

During an European Council of Ministries of Science and Research, representatives from Germany, Austria, Italy, Poland, Malta and Slovakia had decided to oppose the funding of stem cells research. In this context the World Congress for Freedom of Scientific Research and ALC – through their final declaration – launched a petition calling on the EP to ensure that the 7FP at least confirmed the funding of research projects on stem cells obtained from supernumerary embryos; and that eligibility to funding be extended to research projects on nuclear transfer.

In December 2006, 7FP was approved and enforced by the European Parliament and the European Council.

In January 2007 the EP officially communicated to ALC that research projects on stem cells may be fund, but that research activities aimed at human reproductive cloning, at human genetic modification which could become hereditary, along with research activities aimed at the creation of human embryos for research reasons or for the derivation of stem cells, even through nuclear transfer, will be excluded from funding. According to EP communication, a big effort had been made to find out what they called a “just and balanced compromise”. Together with several scientists, policy-makers and representatives of patients associations, 11 Nobel Prize-winners had signed the petition launched by the World Congress.

Unfortunately the issues and challenges addressed by the congress are more and more actual, so that a second meeting was held in March 5-7, 2009 at the European Parliament in Brussels.