Gene include the risk and benefits of

Gene therapy is a medical procedure that
delivers new genetic material into a person to prevent or treat disease, it has
already been used successfully for conditions such as Leber’s congenital
amaurosis (Bainbridge et al., 2008), and holds considerable potential for the
treatment of a variety of genetic and nongenetic conditions (Sheridan, 2011).  Gene therapy could be a way to fix a
genetic problem at its source. By adding a corrected copy of a defective gene,
gene therapy promises to help diseased tissues and organs work correctly.

New research findings and clinical
trials of gene therapy are often featured in the news media, which can
influence public perceptions of this new therapeutic tool (Petersen, 2001). While
media representations of gene therapy are often optimistic and hopeful
(Petersen, 2001), the ethics community has articulated concerns about gene
therapy research and its translation to both therapeutic and enhancement
applications (Rabino, 2003; King et al., 2008). Although the benefits
provided by gene therapy are considerable, they can only be realized if the
patient accepted the treatment in the first place. Examples of ethical concerns
include the risk and benefits of gene therapy for the gravely ill patients. Ethical concerns for healthy
individuals include the potential for nontherapeutic applications (e.g.,
enhancement) and for applications in utero (e.g., ”designer babies”), as well
as the potential for accidental transmission of germline changes (Rabino, 2003;
King et al., 2008). Although some ethical concerns are discussed in the news
media when special circumstances arise, such as the death of a research
participant (Savulescu, 2001; Couzin and Kaiser, 2005), little is known about
how the broader public views these types of concerns and how the ethics of gene
therapy are perceived as a whole.

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As research
into gene therapy progresses and new clinical applications become available, it
is critical to assess public opinion and to ensure that all stakeholders,
including prospective patients and the broader public, are part of the
conversation about moving forward with this therapeutic tool.

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