Paper Example on Genetic Research: Exploiting Human DNA and Human Ethics.

Abstract

Genetic research is the scientific exploitation of human DNA to identify its characteristics. The main objective is the study of the adaptations of genes with respect to certain environmental conditions, sicknesses associated with genetic disorders, suitable medications for genetic diseases, and causes of genetic mutations, among others. Moreover, the most fundamental aspect of the research is taking into account human ethics, which involves the rights to privacy and protection of data. All the stakeholders are expected to handle genetic data in the most professional way and ensure they safeguard their interests. The government, on the other hand, is responsible for enacting laws that govern all these processes to confirm that order is maintained. However, those who donate samples for research are the primary holders of information. They should be well educated and also aware of the risks involved. They have a right to obtain all the information and share it at their own will.

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Keywords: Ethical considerations, genetic data privacy, data sharing, genomic data sharing

Introduction

Genetic privacy involves respecting one's genetic information by protecting it from the hands of the third party. Studies and increased research in human genetic data provide a suitable platform for improving public health by mitigating several diseases. However, social ethics should be taken into account to avoid unnecessary disclosure of data that may put to risk the liberties of the involved individuals. Various genetic privacy laws have been enacted to safeguard the interests of these individuals from public prejudice. These laws emphasize the differences between genetic information and other health information. There are different forms of arguments whereby some authors claim strict protection of autonomy, privacy, and equal treatment of persons with genetic conditions, threaten to accomplish public goods. Others argue that there's no clear demarcation separating genetic data from other health data, which also deserves protections in national health information structure.

In the coming years, a good number of individuals are expected to have their genomes line up for extensive research. The process will only be effective if sharing the outcome is carried out for facilitating data that is driven by basic biological and translational research. There is growing concern that is sharing and releasing of this information possess a risk to genetic privacy related to the identification of the human individual, or confidential /sensitive information about their traits from anonymous genomic sequence. There was a need to enact laws to ensure that privacy procedures adhere to, with the main aim of enhancing the patients' ethical standards.

Moreover, this was to help in keeping the information safe and protect the identity of individuals with genetic disorders. Breach of these laws was to create a public divide and make the research activities ineffective.

Genomic Data Sharing

Open data science is essential in genomic studies, where data is allowed to be freely and publicly shared for translating and promoting genomic research. National Institutes of Health issued genomic data sharing policy in 2015, whose main goal was to ensure broad and responsible sharing of data. Data sharing helps in scaling and shaping the research to greater heights. This was important in coming up with new inventions from readily available sources.

Moreover, the Personal Genome Project has been initiated as an open repository for willing volunteers to create, aggregate, and share a public genome and the comparable health data for the right stakeholders. The volunteers were sourced from different social media platforms to build an extensive database of health and genetic data. Information was readily available for third parties to study and carry out more research. Furthermore, strict laws are necessary to shield those who share data either voluntarily or involuntarily to ensure that human ethics are considered.

Genomic data sharing had widely grown through international borders, and there was a need for establishing a control strategy. This led to the formation of the Global Alliance for Genomics and Health to promote data sharing across international institutions. It's important to provide an anonymous access web service for genomic researchers, with underlying genomic data coming from various institutions and studies. This was to ensure that the genomic information was able to be accessed globally under controlled measures by guaranteeing the rights the holders are observed. That was to help in enhancing global research on genetic science for better health services in a professional and ethical strategy.

Genetic Privacy and Potential Risks

Genetic information is sensitive because it has both current and future health implications for both the individuals and their families. Confidentiality is a situation in which information is disclosed within a trusting relationship and agreement that it would not be leaked to the third party without permission. Security describes granting access to information to only relevant parties, and anonymity is a situation in which the researchers do not illegally remove the identity of the source of specific information. Moreover, there is a bone of contention among scholars on the degree of privacy that shields the holders and their families. Most of them claim that the current laws are not enough, and a lot of work has to be done in the future.

In the 1970s, Congress commissioned a Privacy Protection Study Commission to recommend appropriate privacy protections for many types of data. The report of 1977, acknowledged that unconsented use of personal data, under certain circumstances, can be ethically justified, but also cautioned that if data cannot be protected against unconsented access by others, people face privacy risks. No one was allowed to access genomic data results without the holder's consent. Moreover, they were also allowed to access their products and get the right interpretations or their understanding.

The idea of right genetic privacy should be useful in the analysis of moral or legal problems that concern genetic information. Areas such as military recruitment should have access to genetic information of all the recruits because the nature of their training and work involves vigorous activities. This helps protect individuals with unfavorable genetic conditions. As much it may look discriminative, the health conditions of the affected individuals are safeguarded.

The second scenario is when an employer demands the information to maximize profits by deliberately by not giving opportunities to recruits with the genetic disorder so that they can save on their medical expenses. Most people highly value privacy, but it is essential to liberals. Torben Spaak argues that the moral right to privacy is not as liberty -right, but a claim right that others do not invade my sphere. Therefore, the moral right to privacy must not be confused with the right to liberty.

Privacy and liberty are conjoined. If confidentiality is invaded, then freedom cannot be maintained. Edward Bloustein argues that "an intrusion to our privacy threatens our freedom as individuals o to as we will, just as an assault, a battery or imprisonment of our person does.

Techniques For Protecting Genetic Privacy

The data protection techniques should be employed to ensure effective practices during sampling, research, and analysis. These practices are best when conducted by qualified individuals without selfish interests. Different approaches have been implemented and proved successful.

Controlled access is a classic model for access control that allows users to download data only after approval has been granted under defined conditions. A good example is when the users store data in a secured location and will not attempt to identify individuals. This is important because it prevents malicious access to genomic data by unauthorized individuals. Those who are not approved cannot retrieve any information, and those who can access can only do so under the anonymity of the holders.

Differential privacy is a pattern of post-processing of the output queries such that the inclusion or exclusion of a single individual from the data set makes no statistical difference to the results found.. This guarantees the holder's privacy by making by ensuring uniformity of data, such that no significant impact is seen when any changes are made.

Cryptographic solutions techniques have considered the task of outsourcing computation on genetic information to third parties without revealing any information to service providers. The user sends encrypted versions of their genomes to third parties for interpretations. Third-party individuals do not meet one on one with the users. They have genomic expertise and only get to interpret the information without identifying the owner. This technique requires high end computerized encryption to avoid hacking, which would expose the user.

Laws of Genetic Privacy

Laws governing genetic privacy were enacted to protect users from public exposure and malicious individuals. Over time the rules have changing to allow cater to the rapid changes and diversification of needs. Moreover, a technology that is also an import tool for data protection keeps on changing, and the governing laws need to be updated to cope up with the pace.

The first set of laws relating to consent for collecting and storing information. This requires informed.acquiesce for a third party either to perform or require a genetic test or obtain a genetic information

The rules ensured that the patient remains at ease without being worried. All the necessary information was released to the users and also taking in to account their privacy concerns.

Another set of laws ensured explicit anti-discrimination laws that prevent discriminatory use of genetic data. This law increases testing if patients are aware of them and believe they will be effectively enforced. They are meant to shield patients who have willingly disclosed their conditions to their employers or the insurance company. They are also meant to regulate the privacy of how specific organizations handle genetic information entrusted to them. Insurance companies also require patients to disclose all their medical information. The law is meant to shield those with genetically related conditions from paying abnormal premiums and or being denied medical cover.

Most of the documents protect human subjects, mostly focus on protection from physical harm. However, genetic information caries most of the risks involving psychological damage, injury from discrimination, and stigmatization. Moreover, social and economic damage may also be suffered. The genetic Privacy Act was passed in 1994 as the first United States legislation to regulate genome information.

Another set of laws gives the individual explicit ownership rights over their data by either requiring their consent any time data are disclosed to a third party or by giving them actual ownership rights over data.

These laws also put into account instances where the patient might release information under compulsion. Removing information should be done willingly and voluntarily. The third-party must also take the initiative treating the information with the utmost privacy. The genetic privacy act assumes the person donating the sample retains the property rights to the sample.

Legal protection of data from third parties such as employers or insurance agencies, even when the participant has given consent to release information, is needed. Furthermore, under the common rule, human subject data include not only the sample obtained through interventi...