Essay Example on Genetic Privacy: Guidelines for Judging Cases & Benefits for Society

Abstract

The article provides the necessary information to be used in judging the cases of genetic privacy in terms of the needed guidelines to follow. There is a high investment of human genome data in the present technological advanced society. The importance of such information is that it can aid in identifying and understanding the different aspects of aetiology and disease pathophysiology hence the proper treatment for it. This way, genomic information can help lead to more significant benefits of science and medicine where they can strengthen prevention ability and improve treatment and also reproductive counselling. The article will provide guidelines of gene privacy and its importance to society and science as well. The report has information regarding the genetic information infrastructure, benefits of genomic details, privacy implications of genomic data and the need for the legal protection of genetic privacy and security of health information. The writing will make a convincing case on the need for the protection of private data collected for genetic testing from unauthorized third parties. The right to privacy is endangered because genetic studies need the collection of a participant's biometric data. Their right to dignity is also under threat in the absence of regulations requiring a participant's informed consent is secured in all phases of genetic research.

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Keywords: Genome, genetic privacy, individual privacy, DNA

Introduction

Genomic information is vital and serves beneficent ends as it can help in determining individual characters in an individual life. Such can affect adversely opportunities of the individual in activities such as education, employment and also insurance []. One of the ethical concerns in genetic research is the right to privacy and data protection. Ideally, after participating in genetic research, the biometric data collected from participants and test results should be kept confidential. In genetic analysis, there should be a general rule protecting the disclosure of genetic information to third parties.

Be that as it may, there is a situation where the doctor-patient confidentiality applicable to other medical tests is avoided in genetic tests without the knowledge or consent of a participant (or patient). For example, it is now common for employers to condition entering into an employment contract with a recruit for the latter to subject themselves to a medical examination []. Employers justify prospective employees subjecting themselves to genetic tests to know if the latter has a vulnerability for specific occupational hazards. Geneticists are caught in the uncomfortable position of balancing employer's need to know versus in a dilemma because it is not their desire for a patient to be denied employment opportunities over medical results they have no control.

Genomic Data and Harms of Disclosure

The aspect of privacy concerns for Genomic information is not tied to preventing data access. It also involves the security concerns of the individual being referenced can be potentially violated. Information contained within health records covers a vast number of personal information such as individual special needs, information of having disabilities and financial information. The information contained covering medical information as well as government eligibility criteria, can potentially serve an enormous effect on the exposure of the individual and their family. The first approach for medical information preservation is contained within the law enforcement agencies, immigration offices and social services. Genomic information can not only be used for individual identification but also the children, sibling and parents providing the current health information and future health concerns with a high degree of accuracy [].

The information describing the human characters presented by genomic data are unchangeable and fixed-unchanging. The information presented in genomic information by the indecipherable can, however, be explored using scientific research. However, using scientific understanding can potentially create uncertainty in on the improved use of information kept within the collected DNA samples. Different communities initially adopted eugenics to control the aspect of the genomic pool. It is however not adequately addressing the needs of the genetic concerns fully since there are different ethnicity population and races which portray different characteristics.

Through a combination of genetic technologies and emerging technologies in computers potentially poses compelling privacy issues. It is possible to store a vast number of DNA sample fragment within a network. Despite the implication of advancement in the name of samples which can be stored at a given time, it raises questions on the privacy issues of the data being stored considered data sensitivity []. Patients are likely to face Signiant harm in case the information is disclosed to the wrong party, in the event of a privacy breach, housing, insurance, loss of employment, and economic harm. The victims can potentially be exposed to sociological and psychology damage.

Uniform Standards for Acquisition and Disclosure of Health Information

Recently, uniform national standards that deal with how health information is acquired and disclosed were proposed. The standards capture entire health information and that includes the application of genomic data. it includes substantive and procedural review. The collection of health information is essential even if it might not be able to achieve the social goodness part. However, the collection of health information might mean that a significant future benefit is obtained []. But despite the importance of health information collection, the future technology and the power it possesses might decrease the privacy of genomic data. The acquisition of genomic data privacy which is meant for specific interest would not be served.

The collector of the genomic data has the biggest burden not only in ensuring that public interest is observed but to ensure that the privacy needed to serve the public interest is achieved. Several conditions should be observed when collecting information. The first condition would be that the requirement of the information should be considered. The second condition would be determining whether the data to be collected would be meeting objectives. Also, the collection of identifiable information would be essential to ensure that the purpose of the information is met. The fourth condition would be strategizing on time for holding the data. The genomic data would be held for a specified duration that guarantees that valid objectives are met.

Based on the above conditions, the collection of genomic data would be mandated to its collectors and they would be required to justify the collection, use, and dissemination of the information []. The collectors would have to explain why the collection of tissue and DNA components are necessary to fulfill the purpose. The collection of tissue and DNA repository needs to be made in large amounts. To achieve this, a substantive justification that warrants the data procedural review is needed.

The data procedural review is needed by any organization together with the governmental health sector to determine whether health databases are to be created. Independent expert reviews hold mechanisms that also justify data collection, procedural use, and how it would be kept with optimum security plus privacy. Another standard is the autonomy to control personal data. Maintaining personal autonomy is ethical value in embracing privacy for the genomic data []. The individuals from whom the genetic samples are collected should be given the right to describe and approve how such data is used. The consent followed by the traditional information measured a competent person as the one having adequate information about how the genomic data would be used. Few upgrades in terms of objective standards have been made on this consent to aid in measuring the satisfaction ability of the consent.

To ensure the adequacy of the consent, the process should involve several content fields. The areas to be dealt with would be how to ensure privacy and security of data are maintained, the person whose samples are adopted should have the right of ownership. The individuals have the right to control the data analyzed from their samples. Another field to be handled would be the instructions on how to access, review, and correct the genomic information.

The length of time used while dealing with the genomic data is another field to be acted on. Determining whether the third party would be allowed to access the data is also another area of concern []. The future secondary use of the genomic data should be outlined to limit the scope of the original consent of the genomic data. Outlining future secondary use of the genomic data would ensure that if a new scope is required on such data, then a new consent should be sought and met.

Another standard would be giving the right to review and correct the collected personal data. Individuals from which genetic data has been obtained should be granted the right to correct, change, and complete incomplete records. The right emphasizes both person autonomy and ensuring that the integrity of data is maintained. The individuals would be taught the importance of keeping the integrity of information while controlling their personal information []. They would be in a position to determine the accuracy of the personal information created against them, and then they would complete the data accurately. Through this standard, the health data formulated would be in a position to comprehensively represent and serve societal purposes.

Using data for the intended purpose is another standard. Entities that hold personal information can act on behalf of the individuals. They ensure that the best needs of the individuals are catered for by ensuring the benefit of patients in the health system is upheld. The entities would determine how personal information of the individuals holds to their benefits. They should not be used for any consent that the individuals signed for. Also, thee would ensure that no disclosure of personal information.

Privacy Issues

To ensure that effective functioning of both the health and public health systems, privacy should be maintained at high levels of confidentiality. Both patients and healthcare officers should adore privacy. Most patients find it challenging to disclose their personal information and that of their family history if they do not get the assurance of confidentiality of the data. In events where the patients give incomplete information, the result could be tremendous. It could lead to the patients receiving inadequate diagnosis and treatment. The situation is evident to patients who suffer from genetic diseases.

Disclosing certain information concerning individual current or previous status can potentially lead to loss of self-esteem, social isolation, embarrassment and stigmatization []. When the victims perceive such conditions can result in genetically linked issues such as obesity, mental retardation, alcohol dependency and drug abuse. Despite the genome information being difficult to break through, public perception might be altered, which can predispose the individuals to secondary issues such as discrimination and stigma.

The persons threatened by the fact they might be having genetic disease hide and may not come to take the testing required. They would also fail to join the counselling and treatment for their ailing. It could be drawn out that patient's information carries much and therefore, its privacy should be rendered and satisfied []. Information privacy does not protect the social or economic back...