100,000 years ago, at least six human species inhabited the earth Today there is just one Us Homo sapiens How did our species succeed in the battle for dominance? Why did our foraging ancestors come together to create cities and kingdoms? How did we come to believe in gods, nations and human rights; to trust money, books and laws; and to be enslaved by bureaucracy, timetables and consumerism? And what will our world be like in the millennia to come? In Sapiens, Dr Yuval Noah Harari spans the whole of human history, from the very first humans to walk the earth to the radical - and sometimes devastating - breakthroughs of the Cognitive, Agricultural and Scientific Revolutions Drawing on insights from biology, anthropology, palaeontology and economics, he explores how the currents of history have shaped our human societies, the animals and plants around us, and even our personalities Have we become happier as history has unfolded? Can we ever free our behaviour from the heritage of our ancestors? And what, if anything, can we do to influence the course of the centuries to come? Bold, wide-ranging and provocative, Sapiens challenges everything we thought we knew about being human: our thoughts, our actions, our powerand our future "Here is a simple reason why Sapiens has risen explosively to the ranks of an international bestseller It tackles the biggest questions of history and of the modern world, and it is written in unforgettably vivid language You will love it!" (Jared Diamond)

http://regencyeducationalclub.com/doc/Notable_Reads_-_Sapiens_-_book_report_-_2015-08-24.pdf

Sapiens: A Brief History of Humankind

(1) Whereas the objectives of the Community, as laid down in the Treaty, as amended by the Treaty on European Union, include creating an ever closer union among the peoples of Europe, fostering closer relations between the States belonging to the Community, ensuring economic and social progress by common action to eliminate the barriers which divide Europe, encouraging the constant improvement of the living conditions of its peoples, preserving and strengthening peace and liberty and promoting democracy on the basis of the fundamental rights recognized in the constitution and laws of the Member States and in the European Convention for the Protection of Human Rights and Fundamental Freedoms;

Some Preliminary Comments on the DIRECTIVE 95/46/EC OF THE EUROPEAN PARLIAMENT AND OF THE COUNCIL of 24 October 1995 on the protection of individuals with regard to the processing of personal data and on the free movement of such data.

Biomedical research is being transformed through the application of information technologies that allow ever greater amounts of data to be shared on an unprecedented scale. However, the methods for involving participants have not kept pace with changes in research capability. In an era when information is shared digitally at the global level, mechanisms of informed consent remain static, paper-based and organised around national boundaries and legal frameworks. Dynamic consent (DC) is both a specific project and a wider concept that offers a new approach to consent; one designed to meet the needs of the twenty-first century research landscape. At the heart of DC is a personalised, digital communication interface that connects researchers and participants, placing participants at the heart of decision making. The interface facilitates two-way communication to stimulate a more engaged, informed and scientifically literate participant population where individuals can tailor and manage their own consent preferences. The technical architecture of DC includes components that can securely encrypt sensitive data and allow participant consent preferences to travel with their data and samples when they are shared with third parties. In addition to improving transparency and public trust, this system benefits researchers by streamlining recruitment and enabling more efficient participant recontact. DC has mainly been developed in biobanking contexts, but it also has potential application in other domains for a variety of purposes.

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Dynamic consent: a patient interface for twenty-first century research networks

A Charter of Fundamental Rights for the European Union

The applicant had been arrested in 1997 on suspicion of carrying out a number of armed robberies on mini-cab drivers. He agreed to participate in identification parades but failed to attend on the day on which they were due to take place. Instead he sent a doctor’s note stating that he was too ill to go to work. The parades were rearranged and notice to that effect was sent to the applicant’s home address. The applicant did not attend the rearranged parade, stating that he had not received notification as he had changed address. A further robbery then occurred for which the applicant was arrested. The applicant again agreed to stand on an identification parade, but again failed to attend on the day that it was to take place. Following this failure to attend two more robberies were committed with which the applicant was subsequently charged. The mainstay of the prosecution’s case against the applicant would be the ability of a number of witnesses to make visual identifications and for this reason submitting the applicant to an identification parade was of great importance. In light of the applicant’s failure to attend the parades that had been arranged, the police decided to arrange a video identification. Permission to film the applicant covertly for this purpose was sought from the Deputy Chief Constable under Home Office guidelines. The applicant was taken from prison, where he was being detained in relation to another matter, to a police station. Both the applicant and the prison authorities had been informed that this was for identification purposes and further interviews regarding the armed robberies. On arrival at the police station he was invited to participate in an identification parade but refused. The custody suite at the police station was fitted with a camera which was kept running at all times and covered an area in which police officers and other suspects came and went. Before the applicant arrived at the police station an engineer made adjustments to the camera to ensure that clear images were obtained that were suitable for use in a video identification. The footage of the applicant was then used in a compilation with footage of 11 other volunteers who imitated the actions of the applicant. Two of the witnesses who viewed the video compilation picked out the applicant. Neither the applicant nor his solicitor were informed that a tape had been made or used for identification purposes and were, therefore, not given an opportunity to view it prior to its use.

European Court of Human Rights. ECHR 2015/17 Case of Temchenko v. Ukraine, 16 July 2015, no. 30579/10 (Fifth Section).

Citizens’ Perceptions of Data Protection and Privacy in Europe

This article focuses on whether a certain form of consent used by biobanks – open consent – is compatible with the Proposed Data Protection Regulation. In an open consent procedure, the biobank requests consent once from the data subject for all future research uses of genetic material and data. However, as biobanks process personal data, they must comply with data protection law. Data protection law is currently undergoing reform. The Proposed Data Protection Regulation is the culmination of this reform and, if voted into law, will constitute a new legal framework for biobanking. The Regulation puts strict conditions on consent – in particular relating to information which must be given to the data subject. It seems clear that open consent cannot meet these requirements. 4 categories of information cannot be provided with adequate specificity: purpose, recipient, possible third country transfers, data collected. However, whilst open consent cannot meet the formal requirements laid out by the Regulation, this is not to say that these requirements are substantially undebateable. Two arguments could be put forward suggesting the applicable consent requirements should be rethought. First, from policy documents regarding the drafting process, it seems that the informational requirements in the Regulation are so strict in order to protect the data subject from risks inherent in the use of the consent mechanism in a certain context – exemplified by the online context. There are substantial differences between this context and the biobanking context. Arguably, a consent transaction in the biobanking does not present the same type of risk to the data subject. If the risks are different, then perhaps there are also grounds for a reconsideration of consent requirements? Second, an argument can be made that the legislator drafted the Regulation based on certain assumptions as to the nature of ‘data’. The authors argue that these assumptions are difficult to apply to genetic data and accordingly a different approach to consent might be preferable. Such an approach might be more open consent friendly.

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Open consent, biobanking and data protection law: can open consent be ‘informed’ under the forthcoming data protection regulation?

There are a number of novel technologies and a broad range of research aimed at the collection and use of data drawn directly from the human brain. Given that this data – neurodata – is data collected from individuals, one area of law which will be of relevance is data protection. The thesis of this paper is that neurodata is a unique form of data and that this will raise questions for the application of data protection law. Issues may arise on two levels. On a legal technical level, it is uncertain whether the definitions and mechanisms used in the data protection framework can be easily applied to neurodata. On a more fundamental level, there may be interests in neurodata, particularly those related to the protection of the mind, the framework was not designed to represent and may be insufficiently equipped, or constructed, to deal with.

https://ojs.library.queensu.ca/index.php/surveillance-and-society/article/download/neurodata/neurodata4

Neurodata and Neuroprivacy: Data Protection Outdated?

Genomic research relies on the availability of genomic data. Detached biological samples, stored in facilities known as biobanks, are the source of this data. Donors have interests in these samples. In particular, donors have interests in samples by virtue of the personal data they contain. In relation to this observation, this article puts forward three arguments. First: The current European legislative framework relating to samples is inadequate. This inadequacy results from not understanding samples in terms of the information they contain. Second: European data protection law, in particular as outlined in the forthcoming Data Protection Regulation, might be looked as a source of solutions. However, whether data protection law can apply to samples at all remains a subject of debate. One key argument supports the position that it cannot: Samples are not data, but rather are physical mater, and therefore can only a source of data. Third: The assertion that ‘samples are not data, but rather only physical matter’ is flawed. Samples do contain data – DNA is data. DNA is understood as information both popularly and in the genetic sciences. In fact, even in informatics, DNA can be understood as data.

Many Have It Wrong – Samples Do Contain Personal Data: The Data Protection Regulation as a Superior Framework to Protect Donor Interests in Biobanking and Genomic Research

Dara Hallinan

Papers

Citizens’ Perceptions of Data Protection and Privacy in Europe

Open consent, biobanking and data protection law: can open consent be ‘informed’ under the forthcoming data protection regulation?

Neurodata and Neuroprivacy: Data Protection Outdated?

Many Have It Wrong – Samples Do Contain Personal Data: The Data Protection Regulation as a Superior Framework to Protect Donor Interests in Biobanking and Genomic Research

Genetic data and the data protection regulation: Anonymity, multiple subjects, sensitivity and a prohibitionary logic regarding genetic data?