DNA encryption is the process of hiding or perplexing genetic information by a computational method in order to improve genetic privacy in DNA sequencing processes. The human genome is complex and long, but it is very possible to interpret important, and identifying, information from smaller variabilities, rather than reading the entire genome. A whole human genome is a string of 3.2 billion base paired nucleotides, the building blocks of life, but between individuals the genetic variation differs only by 0.5%, an important 0.5% that accounts for all of human diversity, the pathology of different diseases, and ancestral story. Emerging strategies incorporate different methods, such as randomization algorithms and cryptographic approaches, to de-identify the genetic sequence from the individual, and fundamentally, isolate only the necessary information while protecting the rest of the genome from unnecessary inquiry. The priority now is to ascertain which methods are robust, and how policy should ensure the ongoing protection of genetic privacy.
History In 2003, the National Human Genome Research Institute and its affiliated partners successfully sequenced the first whole human genome, a project that took just under $3 billion to complete. Four years later, James Watson – one of the co-discoverers of the structure of DNA – was able to sequence his genome for less than $1.5 million. As genetic sequencing technologies have proliferated, streamlined and become adapted to clinical means, they can now provide incredible insight into individual genetic identities at a much lower cost, with biotech competitors vying for the title of the $1,000 genome. Genetic material can now be extracted from a person's saliva, hair, skin, blood, or other sources, sequenced, digitized, stored, and used for numerous purposes. Whenever data is digitized and stored, there is the possibility of privacy breaches. While modern whole genome sequencing technology has allowed for unprecedented access and understanding of the human genome, and excitement for the potentialities of personalized medicine, it has also generated serious conversation about the ethics and privacy risks that accompany this process of uncovering an individual's essential instructions of being: their DNA sequence.
Research
Genetic sequencing is a pivotal component of producing scientific knowledge about disease origins, disease prevention, and developing meaningful therapeutic interventions. Much of research utilizes large-group DNA samples or aggregate genome-wide datasets to compare and identify genes associated with particular diseases or phenotypes; therefore, there is much opposition to restricting genome database accessibility and much support for fortifying such wide-scale research. For example, if an informed consent clause were to be enforced for all genetics research, existing genetic databases could not be reused for new studies - all datasets would either need to be destroyed at the end of every study or all participants would need to re-authorize permissions with each new study. As genetic datasets can be extrapolated to closely related family members, this adds another dimension of required consent in the research process. This fundamentally raises the question of whether or not these restrictions are necessary privacy protections or a hindrance to scientific progress.
Clinical Use
In medicine, genetic sequencing is not only important for traditional uses, such as paternity tests, but also for facilitating ease in diagnosis and treatment. Personalized medicine has been heralded as the future of healthcare, as whole genome sequencing have provided the possibility personalizing treatment to individual expression and experience of disease. As pharmacology and drug development are based on population studies, current treatments are normalized to whole populations statistics, which might reduce treatment efficacy for individuals, as everyone's response to a disease and to drug therapy is uniquely bound to their genetic predispositions. Already, genetic sequencing has expedited prognostic counseling in monogenic diseases that requires rapid, differential diagnosis in neonatal care. However, the often blurred distinction between medical usage and research usage can complicate how privacy between these two realms are handled, as they often require different levels of consent and leverage different policy.
Commercial Use
Even in the consumer market, people have flocked to Ancestry.com and 23andMe to discover their heritage and elucidate their genotypes. As the nature of consumer transactions allows for these electronic click wrap models to bypass traditional forms of consent in research and healthcare, consumers may not completely comprehend the implications of having their genetic sequence digitized and stored. Furthermore, corporate privacy policies often operate outside the realm of federal jurisdiction, exposing consumers to informational risks, both in terms of their genetic privacy and their self-disclosed consumer profile, including self-disclosed family history, health status, race, ethnicity, social networks, and much more. Simply having databases invites potential privacy risks, as data storage inherently entails the possibility of data breaches and governmental solicitation of datasets. 23andMe have already received four requests from the Federal Bureau of Investigation (FBI) to access consumer datasets and although those requests were denied, this reveals a similar conundrum as the FBI–Apple encryption dispute.
Forensic Use DNA-information can be used to solve criminal cases by establishing a match between a known suspect of a particular crime and an unknown suspect of an unsolved crime. However, DNA-information on its own can lead to expected errors of a certain probability and should not be used as entirely reliable evidence on its own.
Policy As an individual's genomic sequence can reveal telling medical information about themselves, and their family members, privacy proponents believe that there should be certain protections in place to ultimately protect the privacy and identity of the user from possible discrimination by insurance companies or employers, the major concern voiced. There have been instances in which genetic discrimination has occurred, often revealing how science can be misinterpreted by non-experts. In 1970, African-Americans were denied insurance coverage or charged higher premiums because they were known carriers of sickle-cell anemia, but as carriers, they do not have any medical problems themselves, and this carrier advantage actually confers resistance against malaria. The legitimacy of these policies has been challenged by scientists who condemn this attitude of genetic determinism, that genotype wholly determines phenotype. Environmental factors, differential development patterns, and the field of epigenetics would argue gene expression is much more complex and genes are not a diagnosis, nor a reliable diagnosis, of an individual's medical future.
Incipient legislations have manifested in response to genetic exceptionalism, the heightened scrutiny expected of genomics research, such as the 2008 Genetic Information Nondiscrimination Act (GINA) in the United States; however, in many cases, the scope and accountability of formal legislation is rather uncertain, as the science seems to be proceeding at a much more rapid pace than the law, and specialized ethics committees have had to fill this necessary niche. Much of the criticism targets how policy fundamentally lacks an understanding of technical issues involved in genome sequencing and fails to address how in the event of a data breach, an individual's personal genome can not be replaced, complicating privacy protection even further. As computational genomics is such a technical field, the translation of expert language to policy is difficult - let alone translation to laymen language -, presenting a certain barrier to public perception about the capabilities of current genomic sequencing technologies which, ultimately, makes the discourse about protecting genetic privacy without impeding scientific advancement an even more difficult one to have.
Across the world, each country has unique healthcare and research frameworks that produce different policy needs – genetic privacy policy is further complicated when considering international collaborations on genetic research or international biobanks, databases that store biological samples and DNA information. Furthermore, research and healthcare are not the only fields that require formal jurisdiction; other areas of concern include the genetic privacy of those in the criminal justice system and those who engage with private consumer-based genomic sequencing.
Forensic Science
England and Wales
91% of the largest forensic DNA database in the world, the National Criminal Intelligence DNA Database (NDNAD), contains DNA information from residents of England and Wales. The NDNAD stores genetic information of criminally convicted individuals, those who were charged but acquitted of a recordable offence, those who were arrested but never charged with a recordable offense, and those who are under counterterrorism control. Of the 5.5 million people in the database, which represents 10% of the total population, 1.2 million have never been convicted of a crime. The European Court of Human Rights decided, in the case of S and Marper v United Kingdom (2008), that the government must present sufficient justification for differential treatment of DNA profiles of those in the criminal justice system compared to that of non-convicted individuals; essentially, there must be no abuse of retained biological materials and DNA-information. The decision highlighted several existing issues with the current system that poses privacy risks for the individuals involved: the storage of personal information with genetic information, the storage of DNA profiles with the inherent capacity to determine genetic relationships, and fundamentally, the act of storing of cellular samples and DNA profiles produces opportunities for privacy risks. As a result, the Protection of Freedoms Act 2012 was created to ensure proper use of collected DNA materials and regulate their storage and destruction. However, many problems still persist, as samples can still be retained indefinitely in databases, regardless of whether or not the affected individual was convicted – and even the samples of juvenile delinquents. Critics have argued that this long-term retention could lead to stigmatization of affected individuals and inhibit their re-integration into society and also, are subject to misuse by discriminatory behavior innate to the criminal justice system.
Germany