Principles of Data Privacy & Protection - Essay Example

Is genetic profiling changing the scope of Data Privacy and Protection 26 February 2006 The of this paper questions whether genetic profiling is changing the scope of data privacy and protection. This is an important question, as current privacy and protection laws with regards to personal and private data, are not sufficient to cover genetic data. Data privacy and protection laws are broad and can be contradictory when it comes to protecting our rights with regards to genetic material. The argument is centred on the fact that genetic material is relatively simple to obtain and can be retained for indefinite periods of time. Although genetic profiling has its origins in the healthcare establishment, other establishments are warming up to the benefits of genetic profiling, for instance, education and insurance. This interest has stirred up a debate as insurance laws for example, do permit the use of medical data, which could be interpreted as genetic data for underwriting. This has led to concerns among the general public and other organisation of the use and development of genetic profiling by organisations that do not understand the concept of informed consent, and the issues surrounding the use and retention of very personal information. This paper will argue both sides of the argument, as there is a case for and against genetic profiling in each case study, however it soon becomes apparent that the same issues keep arising - namely, discrimination and informed consent. What this means for data privacy and protection is that more clarity is required, as well as a structured approach to amending the current legislation, and it also means that non-medical organisations interested in genetic profiling, may need to provide the solutions to the issues raised in the argument. Introduction Data privacy and protection started becoming an issue, after the dawn of the information age. It was now very easy and simple to transfer personal data and information, without going through all the mandatory security checks. The digital age also brought with it the realities of digital crime. Privacy can be defined as "the interest that individuals have in sustaining a 'personal space', free from interference by other people and organisations (Clarke)." For example, banks operate privacy conditions, where it is not possible to access another individual's bank account as this infringes on their personal space and confidentiality. The medical establishment also practices privacy in the form of confidentiality, where a doctor cannot disclose any information to anyone else even if they are related to the patient. This disclosure is often left to the patient. Privacy has several dimensions as knowledge of personal information can be classed under four different areas (Clarke). The first aspect is the personal privacy which is concerned with the individual's body and includes compulsory immunisation, blood transfusion, and compulsory provision of samples of body fluids and tissue and even compulsory sterilisation. This deals specifically with medical notes and medical history. The second aspect deals with the privacy of personal behaviour. This involves what are considered to be sensitive matters such as sexual preferences and habits, political activities and religious practices whether or not they occur in public places. This is particularly important as these matters can subject the individual to unnecessary discrimination and/or unprovoked attacks in the form of homophobic attacks or even intimidation. One example of this in the UK is with the animal testing laboratories, where those involved in animal testing are frequently targeted by groups opposed to testing animals. The third aspect deals with personal communications where the individual can claim the right to be able to communicate to others, using various media, without routine monitoring of their communications by other persons or organisations. This mainly applies to the wider aspect of national security, where law enforcement agencies can listen to telephone conversations in order to prevent any threats or attacks to national security, for instance, terrorism. However, we are not interested in this aspect, but the fourth aspect of privacy of personal data. The general public prefer that data about themselves is not made automatically available to other individuals and organisations, as there is no control over the use of this data. This aspect is particularly applicable to genetics, as it raises important issues on the nature of genetic material, its use and its storage. One of the main issues in this area is the retention of genetic data for genetic profiling. According to Article 8 of the European Convention on Human Rights, retention is illegal as it goes against the principles of basic human rights, and is deemed unnecessary in democratic societies, due to its invasive and surveillance nature (Hosein). Another issue is the discriminatory nature of genetic profiling, and the possibilities of system abuse that comes with it. Discrimination could lead to a society where surveillance is the norm, for a factor that cannot be changed. In order to understand the issues in this area and to help us decide the scope of data privacy and protection principles in relation to genetic profiling, it is important to understand the current stance on data privacy and protection, by analysing current data privacy and protection legislation. It is also essential to recognise the nature and origin of genetic material, as that is where the main issue lies within this debate. An appropriate research methodology would be one that involves community relations, as there is obviously a high level of mistrust between the two camps: those in favour of broadening legislation on data privacy and protection, and those opposed to this, but favouring more stringent controls on access to data, in particular, data produced by or from genetic material. By utilising this approach, it will be possible to deduce the areas of mistrust, which are often the most controversial, and come up with solutions that benefit both parties. This is an essential theory, as this is one debate that may take some time to solve, due to the levels of sensitivity involved, and the lack of awareness and positivity in the public. Any solutions will have to focus on appeasing both sides, as neither is wrong nor right. It is also difficult to come to a conclusion due to the nature of genetics profiling, which makes it right in some circumstances, but wrong in others. Data Privacy and Protection Privacy is the claim of individuals, groups and institutions to determine for themselves, when, how and to what extent information about them is communicated to others (AIC 2) This often requires prior consent from the affected individuals as to how much of this information can be shared, and what it will be used for. At the moment, medical records are paper-based or held on separate computer systems that support limited transfer of information. In the UK there are plans to have single records for individuals from birth to death, to support the wider initiatives of the Department of Health in providing a seamless service. It is hoped that this will be achieved by the use of anonymised individual patient data for analysis purposes and for other purposes such as research and audits. This will also involve the development of national disease registers. This data is supposed to help the health authorities to identify factors that contribute to certain disease and this information could be used by other government agencies for their own purposes, such as monitoring reactions to drugs. This data is also used for medical research as it can be used to formulate possible treatments, as well as study the efficacy of medicines and equipment used in the care of patients. By having this patient information available in the NHS, medical research can indirectly increase the effects of treatment outcomes and survival rates, all of which benefit the entire population. The use of this information has been made possible through adherence to the Data Protection Act of 1998 and by following common law, for example, informed consent. Common law deals with the patient-doctor confidentiality. This is an important factor as there are situations or circumstances where doctors often have to disclose personal information, which may be confidential if it is considered to be of public benefit. This leaves the interpretation of the law in the doctor's hands, as matters that may concern the public are not pre-defined, making it even more difficult for the wider participation of the public in genetic issues. This law balances the potential harm caused to an individual against the potential benefit to society. The Data Protection Act on the other hand applies to personal information and states the eight core principles required to process this information (PostNote 3). These principles state that data should be processed fairly and lawfully. Data should be used for the purposes for which it was intended, and should not allow the user to discriminate. When this data is processed it should be used for limited purposes, and contain sufficient, accurate and relevant information. The data must not be stored for longer than necessary, and storage must be secure. It is no good keeping personal data in an area that is easily accessible by all, for instance waiting rooms. If data should be stored electronically then computers will need password protection, as a minimum security level. Data also has to be processed in line with subject's right, this includes processing data according to the conditions of the informed consent and the subject's data can only be transferred to countries with adequate security. This is to prevent the information being sold back to the UK for other uses. The conflict between genetics and data protection is evident in the principles of this act. First of all, there are no set guidelines as to what would constitute fair and lawful processing of genetic data. Law enforcement agencies may view the processing of forensic data as fair and lawful, however, the relatives of those involved in a crime, may not hold this same view. Insurance companies may use this information to calculate insurance premiums, but this may not be fair to the potential customer. Although the data is being used for the purpose it was intended, it definitely discriminates against other users. Genetic data has various uses and would be difficult and almost impossible for it to be used for limited purposes. For example, police DNA databases started out with the primary aim of obtaining DNA of criminals to make subsequent identification possible, however, this has moved on to include the genetic material of those that could be related to the criminal, as it supposedly rules them out of any criminal investigations. Genetic data can also be stored indefinitely, and this obviously concerns those that have contributed to the database, as they are unable to influence the level of development of genetic profiling. This also brings in informed consent, where the individual must understand what is going to happen to their information, and how it will be stored and shared. These principles raise important issues in the field of genetics, as it is difficult and sometimes impractical to follow all these principles. For example, genetic information is available for an indefinite period of time, and raises the question of what is considered to be necessary in terms of its storage. Genetic data cannot be secure as it is can be obtained with very little effort, and the potential for its use is not limited. The fact is these laws do not take into account the considerations and the nature of genetics. This raises the issue of the lack of definition of privacy in the context of genetic profiling, as for some privacy is about protecting dignity and for others privacy can be limited to some part of them. Those supporting greater legislation for genetics state new laws will help prevent genetic discrimination and abuses, whilst those against this information do not see what difference this will make if obtaining the genetic material cannot be controlled. To understand this argument, it is essential to analyse the advantages and disadvantages involved in all cases of genetic profiling. Genetic Profiling Genetic profiling is the analysis of a person's entire gene in order to reveal their personal genetic information. Approximately 99.8% of the genetic information in our DNA is identical in all people and genetic profiling focuses on the 0.2% that is variable (Staley 9). This means that profiling can be used to find out the variations that may affect an individual throughout in life, and in a healthcare setting, this information is used to make individuals aware of any risks and to individualise treatment options. By having an individual's genetic profile, clinicians are also able to accurately diagnose conditions and determine how an individual is likely to react to certain substances. Genetic profiling in the medical establishment is associated with benefits and a higher quality of life for those who may be at risk of developing a genetic illness. Genetic profiling due to the advances made in developing new drugs and treatments for the treatment of genetic disorders, such as Duchenne Muscular Dystrophy (DMD), Cystic Fibrosis (CF) and Huntingdon's Disease. These genetic disorders mainly affect young people, and severely shorten their lifespan. Conventional treatment has failed for these conditions, as they can only treat the symptoms and not treat the disease. Those affected by genetic conditions are being invited to have their details entered on a database for research purposes. Genetic conditions also affect a small proportion of the population but their effects can be very costly for the patients and health services. Genetic profiling involves the collection of DNA profiles of samples from crime suspects, offenders and volunteers. Genetic profiling is supposed to link individuals to crime scenes and make crime prevention possible. However, genetic profiling is not limited to work with law enforcement agencies. The employment sector has also discovered a use for genetic profiling to achieve the purpose of testing employees for genes that may be used to reduce the cost of absenteeism and lost productivity. Genetic profiling could also be used to screen for sensitivity to substances in the workplace so that claims for compensation are reduced. Although employers may claim that they are using information lawfully as they want to account for their costs and manage their risk associated with employing people, this is definitely discriminatory against potential employees, as genetic profiling can indicate the likelihood of developing a certain disease or hypersensitivity to workplace substances, but this may actually not develop further. Individuals have no control over their genes, in much the same way that employers have no control of toxins they are unaware of, hence the notion of double standards and discrimination. Potential employees may also not be aware of the potential genetic errors they have, and denying an individual a job on this basis, will force the employer to disclose their reasons. This brings in confidentiality and the "right to know" principle, where individuals have the right to know and the right to not know their genetic status (Ekberg 2). Testing for the ability to perform a job is already undertaken through occupational health, but this involves relatively common and simple tests such as eye tests, and physical ability dependent on the nature of the job. Compulsory testing is an issue in this area, as revealing genetic mutations which may affect the daily well-being of an individual may be detrimental to their health. However, other schools have advocated the use of genetic profiling for occupations like fire fighting, where an individual may appreciate the knowledge of a defect that may affect their ability to perform. Therefore compulsory testing is only ever acceptable where the job places great risk on the public or colleagues, for example pilots and epilepsy (Ekberg 3). The other ethical issue on employers using genetic profiles is the possibility that organisations will use this as a means to cut costs, as there are obviously some populations with higher incidences of a certain mutation than others. This could lead to an entire locality being excluded from employment, and workers being "shipped in" on the basis of cost. Insurance companies have also been lured by the benefits of genetic profiling for their organisations as this would allow them to identify individuals at risk or more likely to make a claim, and hence their premiums should be higher. This would be done by excluding those at high risk from any funds to prevent excessive claims. Such polices would affect those with a family history of a genetic disease, such as diabetes, where affected individuals sometimes experience black outs whilst driving. The insurance industry claims that by testing for genetic conditions, they can advise individuals of the conditions so that they can take steps to manage their condition. This creates discrimination, as positive genetic information is accepted and all negative information ignored, regardless of the fact that claims are not dependent on genetic health. Offering individuals tests can also be considered as a bribe in exchange for genetic information. Discrimination already occurs in the insurance industry for individuals who engage in motor racing, and other extreme sports with have a high risk factor. However, insurance companies can discriminate against these individuals as they have chosen to undertake these activities and understand the full implications of their actions. This is different to those with genetic illnesses as they cannot change their genetic profile. More so, in the UK, the DVLA already assesses competency to drive for all those with medical conditions that could affect their driving abilities. However, human rights do not prevent discrimination in insurance, as there already is a law that promotes the use of medical information for underwriting. In the UK, there is no defined law prohibiting genetic testing in insurance, but organisations wishing to undertake such tests have to prove that the profile has a proven ability to predict a condition or premature death. This has already been enacted in the UK, where genetic profiling for Huntingdon Disease can be used to assess life insurance application (Human Genetics Commission (2006) 14). Genetic profiling in an educational environment is quite rare and has the potential to stir up controversy, as most individuals in the education establishment are children and adolescents without the right to give fully informed consent. Genetic profiling is used in education to diagnose learning disorders such as ADHD, dyslexia and other conditions which would increase the demand in the level of support on the school. It can also identify behavioural problems which would influence the level of discipline required. Genetic profiling in education is considered useful for researchers to determine the frequency and distribution of specific gene mutations which can aid policy makers, and screening for mutations can be offered to the more senior students to raise awareness and to inform the next generation on ways to avoid reproducing this risk (Hayes 4). This approach has several flaws as school environments provide the potential for labelling, stigma and altered expectations. Children are also more susceptible to bullying and developing negative views of themselves which may lead to psychosocial problems later in life. Children are also in the process of developing their self-identity, and any perceived attack on their sense of self, could emotionally scar the individual's development, as they withdraw socially and focus on a problem, they otherwise would not have found out. Children in education setting are also not able to provide fully informed consent according to common law, and there is definitely an issue with providing such life-changing information, to an eleven year old for example. As children, they are not fully aware of their basic human rights, as well as those that come with being a citizen of the land they live. Revealing such information or even grading children on such profiling, will also lead to a breakdown in social and family cohesion, as the child may feel that their parents could have prevented them from having a particular condition. Genetic profiling in immigration is used to assess the health status of the applicants and to legitimise family relations by detecting false identities and reducing fraudulent claims (Hayes 4). However, such tests can also lead to the possibility of revealing cases of non-paternity which can be, once again, damaging for the individual's sense of self. Enforcing familial ties based on genetic profiling can be dangerous for immigration services, as they will not be taking into account, the fact that most families have bonds that are not solely dependent on the certainty of paternity. Immigration services have a fair point by testing for infectious diseases such as tuberculosis in a bid to reduce the risk and pressure to the public and health services; however this could be classed as discrimination as it may be common for nationals from a certain country to exhibit such symptoms or conditions. The government would also risk being accused of implementing policies that resemble ethnic cleansing, which ultimately lead to social exclusion and discrimination. DNA profiling is now widely used to identify or eliminate a suspect in a criminal investigation by matching samples taken from a suspect with samples taken from a crime scene or victim. DNA identification may be used to identify deceased persons or human remains where the individual is no longer recognisable. Genetic profiling in the area of law enforcement is different to that in the other mentioned area, as law enforcement does not seek to know any medical information, but are more concerned with identification. This is one of the reasons as to why this is acceptable to the general public; however, there still is a risk of being a suspect in a criminal investigation. This risk can arise from contamination of the sample or errors such as false positives and false negatives arising for similar genetic material which can misinterpreted. Law enforcement agencies are also looking into extending their use of genetic material to detecting individuals predisposed to violent, aggressive or criminal behaviour. It is this proposed use of genetic material that is causing controversy, as genetic profiling may reveal the propensity to be violent, but the behaviour may not manifest itself. The result of such policies will lead to discrimination, as law enforcement officers could arrest an individual on the basis of prejudice and not evidence. There is also the risk of placing social labels on individuals, which are hard to shake off, and one example of this occurred in the UK, when images of sexual offenders were made public. This resulted in some individuals being wrongly identified, and attacked by the public. This proposed move by law enforcement agencies is a result of increased global terrorist attacks, where data retention for known possible terrorists became law to prevent and detect crime (Human Genetics Commission (2006) 14). The issue with organisations requesting genetic profiling material is that they create a conflict between maintaining genetic privacy and the right to obtain and access genetic information. At the moment genetic information is mainly used for identification purposes, for instance, to identify criminals and to identify defective genes in those with family or genetic histories. However, as technology moves forward, the uses for genetic material also increases and extends its use to predictive purposes. The organisations view these changes as legitimate but the uses have the downside of being discriminatory. This discriminatory view is not unjustified, as with all information held on databases, the scope for error still remains. Mistakes with genetic data can lead to the destruction livelihoods and well-being for those wrongly identified or accused, as they will find it immensely difficult to prove the databases wrong or incorrect. Genetic data is also subject to contamination, which can invalidate the reliability, and is also a waste of time. A couple of trends and themes are emerging for the use of genetic profiling in employment, insurance, education, immigration and law enforcement. These include mainly genetic discrimination. Genetic discrimination cannot be excused especially with various acts such as the Human Rights Act, and other global standards for the prevention of discriminatory practices. There is also the risk to genetic privacy, as the prospect of compulsory testing will definitely lead to individuals becoming aware of genetic condition and predispositions they were unaware of. They will become aware of this in inappropriate circumstances, with no information and psychological support. Compulsory testing will also take away the concept of choice for individuals, as they will feel that their future is determined by factors they cannot change or control. This risk to genetic privacy is also accompanied by the loss of trust in the authorities, as the public do feel that the authorities are there to look after their best interests and to protect them. If they are now discriminated against and have no say in how their genetic material is used, then this confidence is breached. This could actually have negative effects for society, as the threat of widespread social rebellion could become a reality. Even though genetic material is precise, those assigned to analyse and read this information may not be, therefore introducing error into the equation. Any errors by those responsible for genetic material will further damage trust between the authorities and the individual. By also introducing profiling into an educational environment, there is a risk of raising children who will learn to discriminate on the basis of genetics, when this is not acceptable. Genetic discrimination will create a social underclass, and include those who are in the grey area. This grey area includes those with recessive genes, conditions which can be treated before they develop or conditions which are likely to develop provided the individual is in a certain environment, for example, individuals of South Asian and African descent are more likely to develop diabetes if they move to a western environment or adopt a western diet. All these threats to genetic privacy point to a surveillance culture, where individuals are constantly monitored and judged by the quality of their DNA. As it is also a profitable business, there is a high risk that genetic information can be stolen by employees and sold on to more unscrupulous individuals. This has happened in the service sector, where there have been a small number of cases where customer information has been passed on to individuals or where bank details have often ended up on the public domain. The threat of genetic information theft is not unfounded as proven by debates recently held in the United States. In the UK, the Human Genetics Commission is working on a report that considers creating and storing genetic profiles of all newborns for future use in individualized medical treatment. Although some laboratories have been keeping the cards for longer periods, others have discarded cards because of concern that the cards might be misused. There was a case involving law enforcement officials attempting to gain access to Guthrie cards as a source of DNA. When Guthrie cards were requested from a laboratory in Australia, laboratory officials destroyed the cards rather than provide access because such use of baby DNA was clearly not envisioned by the parents when they agreed to testing. There has been concern in the medical community that unless Guthrie cards are protected from re-use, parents will be reluctant to have their babies tested (Human Genetics Commission). This highlights the lack of policy and definition in this area. Not all private organisations could have been trusted to react in the same way, making it neither wrong nor right to provide samples. Genetic profiling of embryos and newborns raises privacy issues in family relationships, especially if test results are not kept confidential. This could result in others outside the family learning about the genetic predispositions of the parents as well as the children. When parents agree to have a foetus or a newborn tested for disease, they do not think about the possible use of the DNA in the sample for research, profiling or law enforcement purposes. Use of DNA for other than original purpose may violate individual privacy unless it is consistent with good information practices, including informed consent. Another concern is that authorities will view this DNA evidence as certainty rather than probability. This could lead to information being used selectively to reinforce existing suspicions or prejudices. If this happens, then further mistrust occurs. Discussion The argument is clearly based on the fact that genetic information is similar or not similar to existing medical information, and should be governed by the same principles as a result. This is founded on the nature of genetic material and how it is relatively easy to obtain genetic information and analyse it. The main fear is that it takes only one strand of hair to find out an individual's genetic information, which increases levels of mistrust, as potential employees may feel that they are being watched or that samples of the genetic material may be obtaining without their consent. Especially when obtaining such material is not difficult at all. Even though there are laws on the protection and privacy of data, the laws are not clear on the retention limits of this type of data, which brings in private organisations, as some are known to not query the origins of the genetic information passed onto them. The fact that private organisations exist in the field of genetic testing, points to evidence of a demand for this information regardless of the costs involved. Solving this problem would then require a major amendment of existing laws governing data transfer and data retention in private organisations. Making genetic information widely available also introduces bias into the entire system, as the lack of clear guidelines means that profitable conditions will be chosen over the more beneficial ones, which is the probable case in the insurance industry, where by introducing genetic profiling, they stand to eliminate or exclude a significant number of people likely to make a claim. Although this practice may weed out bogus claimants and fraudsters, discrimination would be applied to a wider section of the community which reduces the intended benefits. This issue is complicated to address, as there are a number of factors to address, and it is about finding the best possible solution that is acceptable to the public without introducing any levels of discrimination. This is not possible however without introducing extensive levels of bureaucracy. As genetic testing and diagnosis is still in its infancy there are concerns over the accuracy of diagnostic and predictive information for inherited diseases, as this raises issues with consent and confidentiality when it comes to disclosing information that could affect an entire family. On the sociological side, there are issues with how individuals will deal with this information, as knowledge of our own genetic make-up may raise anxieties, or raise hopes for techniques that are not fool proof. The other side of the argument proposes a reflection on the nature of genetic information. They have questioned how unique genetic information is, considering human beings share 98% of their genetic information with chimpanzees. This may seem like a trivial issue; however this presents a very small percentage difference for the variations that exist within our society of six billion inhabitants. This has been supported by the fact that medical and personal information can be obtained from hospital wards, or even medical notes, as some privacy and protection policies are not carried out stringently in these environments as a result of poor management and communication practices. Although our genetic information has an effect on most people, proponents against increased privacy laws have suggested that those in favour of privacy laws are to blame for the negative perception the public has, as they have over-hyped the nature of genetic information and its exclusivity. They feel that terms such as "a blueprint for life" do not provide an accurate description of the role of genetic information and the knowledge that can be derived from it. Conclusion To summarise, the arguments on data privacy and protection for genetics profiling is mainly centred on the responsibility of the users of genetic information. It could be true that genetic information is really no different to other medical and personal information that is available in health establishments. However, the real issue is with dealing with the fact that obtaining genetic information is relatively effortless and that retaining this information indefinitely raises anxiety and goes against basic human rights acts. The thought that someone could follow you around and collect discarded coffee cups or get a strand of your hair, is worrying enough for the proponents of the data privacy and protection laws. This issue needs to be accepted as one that cannot be changed, as we cannot stop ourselves shedding one strand of hair, and we cannot start becoming paranoid over discarded objects that may contain our genetic information. The real problem lies with the institutions that collect and store this information, without requesting knowledge and/or origins of the genetic information. It is a different case for genetic information volunteered or consented in hospitals or medical researches centres as participants are often told of the disadvantages and advantages, and are also informed of the possible use of their data. This results in the use of genetic information in an acceptable manner, and in way that guarantees some form of privacy. The laws and regulations on the use of genetic information are so strict in the United Kingdom, that it is almost impossible to conduct any meaningful research into this area. This is not particularly good for the advancement of genetic research, and this should be dealt with by increasing the awareness of issues surrounding genetic research, and the potential benefits to the participants. On the other hand, the storage of genetic material by non-medical institutions raises suspicion, as the uses for this material, are most certainly discriminatory to a segment of the population. Although, educational, insurance and law enforcement agencies may have legitimate purposes for obtaining these samples, there is the concern that all issues in society will end up being shifted to forensics, instead of social mechanisms. For example, teachers could exclude pupils for bad behaviour that is a result of the pupil's genetic make-up, when it may actually be that the teacher is not effective enough with their class. Furthermore, it causes the labelled pupil to rebel and cause more problems, as they feel that they cannot change or modify their behaviour as it is determined by genes that cannot be altered or changed. Another issue is that of informed consent, as when individuals give their consent, they are normally consenting for specific procedures and processes that their personal information will be used for. A breach of confidence and trust will definitely occur in situations where an individual would have originally consented to use of their information for medical purposes, but then their details are transferred without their knowledge to third parties, i.e. insurance companies. When insurance companies start asking for this information, it can only mean one thing for the participant: increased insurance premiums. It is true that there is more risk associated with certain conditions, for example, driving, however, having a genetic condition and being penalised for it is totally unacceptable, as we do not have the choice as individuals, to select our genetic profiles. Genetic conditions are not by choice, and at the moment, the clock cannot be wound back to a point where these genetic conditions become evident and present. This would be acceptable for self-inflicted conditions such as drug abuse where the individual is in control of their actions and is making a conscious decision at some point to undertake in these activities. This is not the case with genetic conditions, as the individual is born with them and have to live and accept their genetic make-up as it is not a variable like the length of one's hair, but a constant. It cannot be denied that better and earlier knowledge about a genetic condition will help to develop preventive measures to reduce the consequences of disease or eliminate its onset. Prior knowledge of existing or predisposed genetic conditions can also help individuals adjust their lifestyles to negate the effects of the condition. This may also assist in making important lifestyle plans and choices, but we cannot get away from the recurring theme of the potential disclosure of genetic information to other individuals without consent. In the writer's opinion, the answer lies in more targeted and focussed guidelines for the sharing of genetic information. We have identified the main issue as that of the individual consenting to the use of their genetic information, but it also has to be emphasised that this should always be in the best interests of the public and not of the individual. Solutions need to focus on the protection of individual human rights, regardless of the purpose or intent of the retention of material. In the medical establishment, personal information is not retained indefinitely, and researchers only use personal material for the purposes the individual consented too. The same approach should not be too difficult outside of this area, however the main obstacle is the involvement of profit making organisations that are requesting to use information for predictive, not identification purposes. It is often difficult for commercial organisations to justify how they will avoid discrimination, but it seems the commercial organisations may have to come up with solutions to present to the public for consultation. The purpose of this approach is so that commercial organisations can truly identify and deal with all the ethical and moral issues of using data for predictive purposes and without seeking prior consent. 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